2021 INS Annual Meeting
Online Conference
November 4-5

Abstracts

See the posters page and Poster Hall in Gather for all presentations submitted to date. The INS is not responsible for the scientific data or conclusions presented.

Empirical

Abstract 2  /  Presentation  / Best Abstract  /  TOP ABSTRACT (AJOB NEUROSCIENCE)

Best Abstract
AJOB Neuroscience cover title

Top Abstract

Risks, benefits, and value: patient-participant perspectives on intracranial basic science research

Ally Peabody Smith (1), Lauren Taiclet (2), Hamasa Ebadi (3), Nader Pouratian (4), Ashley Feinsinger (5)   / Contact: [email protected]
1. University of California, Los Angeles, Department of Philosophy; 2. David Geffen School of Medicine, University of California, Los Angeles; 3. UT Southwestern Medical Center; 4. UT Southwestern Medical Center; 5. University of California, Los Angeles, Departments of Medicine and Philosophy;

Background:

Recent work on the ethics of human intracranial brain research often focuses on therapeutic interventions (Chiong et al., 2018; Hendriks et al., 2019). Less work addresses the distinct ethical issues of non-therapeutic intracranial research, and when discussed, centers the perspectives of investigators (Mergenthaler et al., 2021). Removing the therapeutic possibility changes the ethical landscape, particularly for risk-benefit assessments and associated value judgments. While regulation requires the risks of research to be reasonable in relation to the benefits, making these determinations often lacks a uniform method (Emanuel et al., 2000; Wendler et al., 2007). We propose that patient-participants have situational knowledge of the risks, benefits, and value of non-therapeutic studies. Their normative judgments should be considered alongside investigators'. Their perspectives protect against biasing investigator perspectives and may mitigate exposure to undue harm.

Objective:

To elucidate the perspectives of patient-participants in intracranial basic brain research with respect to risks, benefits, motivations for participation, and value of basic brain research.

Methods:

As part of an ongoing qualitative study funded by the NIH BRAIN Initiative, semi-structured interviews were conducted across two sites with 14 patient-participants who participated in non-therapeutic research during implantation of a deep brain stimulator. The interviews were recorded, transcribed, and coded by at least two independent reviewers using a codebook developed by all team members. A grounded theory thematic analysis was completed.

Results:

Five preliminary themes emerged: influence of life experience on motivation to participate, trust in researchers and scientific progress, impact of surgical context on risk assessment, helping others, and the importance of basic brain research. Despite the lack of personal clinical benefits, participants expressed strong beliefs in future clinical applications, little concern with risk, and robust feelings of trust towards their surgeons.

Conclusions:

Participants discussed their experiences with neurological disease, trust, and the desire to help others as motivations to participate. While they acknowledged the study's non-therapeutic nature, they often discussed the importance of their surgery and study together. For example, some patients recognized that they were the beneficiaries of prior basic brain research and connected their participation to future care. Perceptions of risks associated with the study were low and assessed within the context of the risks of their DBS implantation.

These narratives add to the scientific community's discussions of the value of basic brain research. They point to a responsibility to continue inclusive conversations about acceptable risk, particularly in the context of surgical interventions and across various social relationships to neurological disease.

References:

  1. Chiong W, Leonard MK, Chang EF. Neurosurgical Patients as Human Research Subjects: Ethical Considerations in Intracranial Electrophysiology Research. Clin Neurosurg. 2018. doi:10.1093/neuros/nyx361
  2. Emanuel EJ, Wendler D, Grady C. What Makes Clinical Research Ethical? JAMA. 2000;283(20):2701–2711. doi:10.1001/jama.283.20.2701
  3. Hendriks S, Grady C, Ramos KM, et al. Ethical Challenges of Risk, Informed Consent, and Posttrial Responsibilities in Human Research With Neural Devices: A Review. JAMA Neurol. 2019;76(12):1506–1514. doi:10.1001/jamaneurol.2019.3523
  4. Mergenthaler JV, Chiong W, Dohan D, et al. A Qualitative Analysis of Ethical Perspectives on Recruitment and Consent for Human Intracranial Electrophysiology Studies. AJOB Neurosci. 2021;12(1):57-67. doi:10.1080/21507740.2020.1866098
  5. Wendler D, Miller FG. Risk-Benefit Analysis and the Net Risks Test. In: Emanuel EJ, Grady CC, Crouch RA, Lie RK, Miller FG, Wendler D., eds. The Oxford Textbook of Clinical Research Ethics. Oxford University Press; 2007:503-514.

Disclosure: None

 

Abstract 3  /  Presentation

Neuroethics literacy in Brazil: shaping the future in the global neuroethics discussion

Angélica Francisco de Oliveira Dutra de Morais (1,4), Maria Inês Nogueira (1,2,4), Marisa Russo (1,3,4)   / Contact: [email protected]
1. Neurociências e Comportamento - Instituto Psicologia (NeC-IP) - Universidade de São Paulo - Brazil; 2. Instituto de Ciências Biomédicas - Department of Anatomy – Universidade de São Paulo - Brazil; 3. Department of Philosophy, Universidade Federal de São Paulo, Brazil; 4. NEURO-I-SELF (CNPQ - Group);

Problem: The first social justice we must guarantee in the field of neuroethics is the access to the discussion of neuroethics, what it means, and how police and governance in the use of neurotechology can impact society. Many Latin America countries, need urgently neuroethics literacy to participate in these discussions.

Background: Almost twenty years ago, the first meeting of Neuroethis (1) had expressed concern about the ethical, social, legal and philosophical impacts of neuroscience. Several countries, research institutes and non-governmental institutions, particularly USA, Canada, Australia and European Nations started the revision of their codes of bioethics, and made efforts to guarantee extensive discussions about neuroethics (2). However, Latin America and Africa, still lacking the foundation of neuroethics discussions, had less opportunity to contribute with their perspective to global neuroethics discussions (3, 4). To fill this gap, a unifying project was created to I) map the dissemination of academic discussion in neuroethics in Latin America, focusing on Brazil, Argentina and Chile; and II) propose workshops, courses, and scientific discussions to foster neuroethics literacy in the academic and social context. The results below describe the first step of this concerning to Brazil.

Methods: To find the main academic researchers in the field of neuroethics in Brazil, we searched for the words "neuroética", "neuro-ética", "ética das neurociências" and "ética das ciências cognitivas" in the two main databases of national academic production (CAPES (5), FAPESP) and in the research groups database (CNPq-Groups) among 2002-2019.

Results- We found 206 theses which contain some of the above words. Concerning the research group database of CNPQ, we found 7 groups with key words related to our survey. Just 2 of them have these words as the main topic of their research.

Conclusion - Despite the 20 years of global neuroethics discussions, Brazil's academic participation in these field is still lacking. The absence of neuroethics literacy results in a failure to recognize the relevance of social impacts of neurotechnology by researchers and society in Brazil. Mapping the fields of neuroethics discussions in Latin America, particularly in Brazil, will help us to understand the values, concepts, and gaps in neuroethics literacy. Brazil can better organize course and workshops to engage the community to consider their own values and priorities in the use of neurotechnology. This work can contribute to the construction of a real representative global understanding of neuroethics.

References:

  1. Marcus, S. J. (Ed.). (2004). Neuroethics: Mapping the Field (1st ed.). New York: Dana Press.
  2. Russo, M. (2018). Filosofia da Mente, Filosofia da Neurociência, Neuroética e Medicina: Da Pesquisa à Clínica. Quarta conferência do ciclo Reflexões sobre Filosofia e Medicina, Instituto de Estudos Avançados da Universidade de São Paulo (IEA/USP). Recuperado em 20 outubro, 2020, de http://www.iea.usp.br/midiateca/video/videos-2018/filosofia-da-mente-filosofia-da-neurociencia-neuroetica-e-medicina-da-pesquisa-a-clinica
  3. Rommelfanger, K. S., Jeong, S. J., Ema, A., Fukushi, T., Kasai, K., Ramos, K. M., Salles, A. & Singh, I. (2018). Neuroethics questions to guide ethical research in the International Brain Initiatives. Neuron, 100(1), 19-36, DOI: 10.1016/j.neuron.2018.09.021 PMID: 30308169
  4. Salles, A. (2018). Neuroethics in context: The development of the discipline in Argentina. In L. S. M. Johnson & K. S. Rommelfanger (Eds.), The Routledge Handbook Of Neuroethics (429-441). New York: Routledge.
  5. Coordenação de Aperfeiçoamento de Pessoal de Nível Superior. CAPES. Catálogos de Teses e Dissertações – Brasil [1987 a 2012; 2013 a 2016; 2017 a 2019]. Recuperado em 2020 e 2021, de https://dadosabertos.capes.gov.br/

Disclosure: None

 

Abstract 4  /  Presentation  / Best Abstract Honorable Mention /  TOP ABSTRACT (AJOB NEUROSCIENCE)

Best Abstract Honorable Mention
AJOB Neuroscience cover title

Top Abstract

Off-label promotion of transcranial magnetic stimulation (TMS) by providers

Anna Wexler (1), Ashwini Nagappan (1,2), Deena Kopyto (1), Emiliano Santarnecchi (3,4), Alvaro Pascual-Leone (4,5,6)   / Contact: [email protected]
1. Department of Medical Ethics & Health Policy, Perelman School of Medicine, University of Pennsylvania, Philadelphia, PA; 2. Department of Health Policy and Management, UCLA Fielding School of Public Health, Los Angeles, CA; 3. Berenson-Allen Center for Non-Invasive Brain Stimulation, Beth Israel Deaconess Medical Center, Harvard Medical School, Boston, MA, USA; 4. Department of Neurology, Harvard Medical School, Boston, MA; 5. Hinda and Arthur Marcus Institute for Aging Research and Deanna and Sidney Wolk Center for Memory Health, Hebrew SeniorLife, Boston, MA; 6. Guttmann Brain Health Institute, Institut Guttmann, Institut Universitari de Neurorehabilitació adscrit a la UAB, Badalona, Barcelona, Spain;

Background: Transcranial magnetic stimulation (TMS) is a non-invasive brain stimulation technique cleared by the Food and Drug Administration for depression, severe migraines, obsessive-compulsive disorder, and smoking cessation. While TMS device manufacturers cannot legally promote TMS for off-label indications, providers face no analogous restrictions (Dresser and Frader, 2009). For these reasons, ethical concerns about the off-label promotion of TMS by providers have been raised in literature (Horvath et al., 2011). To date, however, these concerns have remained theoretical. The present study therefore aimed to provide empirical data about providers' off-label promotion of TMS by analyzing the websites of clinics offering TMS in the United States.

Methods: TMS clinic listings (N=2,222) from six online directories were reviewed by a single coder between February and June 2020. Clinics based in the U.S. and having a website that mentioned the provision of TMS for an off-label indication were included in our final sample (n=104). Two coders coded for the provision of off-label indications and other therapies commonly defined as complementary and alternative medicine (CAM; Wieland et al., 2011). A subset of websites (n=28) were double-coded to assess interrater reliability (IRR; 87.8%).

Results: The top off-label indications referenced were anxiety (67.3%), post-traumatic stress disorder (59.6%), and bipolar disorder (50.0%). The language used to reference off-label indications ranged from misleading claims with regard to regulatory status to misrepresentations of the nature of the evidence base. Nine clinics (8.7%) offered TMS for cognitive or performance enhancement and 44 (42.3%) offered other CAM therapies, such as acupuncture, biofeedback, and intravenous nutrient therapy.

Discussion: Although physicians may legally provide off-label therapeutics, the public promotion of off-label uses is an ethical gray area. Some of the off-label TMS indications promoted by providers have a weaker body of scientific evidence supporting efficacy than others (Lefaucheur et al., 2020). We suggest that ethical concerns exist on a continuum, with the weaker the evidence base for an off-label indication, the greater the responsibility of providers to be transparent about efficacy and to exercise restraint when promoting its use (Largent et al., 2009). This is a particular imperative given providers' conflict of interest related to the income associated with offering TMS and the financial burden passed to the patient due to lack of insurance coverage for off-label indications.

References:

  1. Dresser R, Frader J. Off-Label Prescribing: A Call for Heightened Professional and Government Oversight. J Law Med Ethics. 2009;37(3):476-486. doi:10.1111/j.1748-720x.2009.00408.x.
  2. Horvath JC, Perez JM, Forrow L, Fregni F, Pascual-Leone A. Transcranial magnetic stimulation: a historical evaluation and future prognosis of therapeutically relevant ethical concerns. J Med Ethics. 2011;37(3):137-143. doi:10.1136/jme.2010.039966.
  3. Wieland LS, Manheimer E, Berman BM. Development and classification of an operational definition of complementary and alternative medicine for the Cochrane collaboration. Altern Ther Health M. 2011;17(2):50-59.
  4. Lefaucheur J-P, Aleman A, Baeken C, et al. Evidence-based guidelines on the therapeutic use of repetitive transcranial magnetic stimulation (rTMS): An update (2014–2018). Clin Neurophysiol. 2020;131(2):474-528. doi:10.1016/j.clinph.2019.11.002.
  5. Largent EA, Miller FG, Pearson SD. Going off-label without venturing off-course: evidence and ethical off-label prescribing. Arch Intern Med. 2009;169(19):1745-1747. doi:10.1001/archinternmed.2009.314.

Disclosure: The authors disclose the following relationships. Dr. Pascual-Leone is a co-founder of Linus Health and TI Solutions AG; serves on the scientific advisory boards for Starlab Neuroscience, Magstim Inc., Nexstim, and MedRhythms; and is listed as an inventor on several issued and pending patents on the real-time integration of noninvasive brain stimulation with electroencephalography and magnetic resonance imaging. Dr. Santarnecchi serves on the scientific advisory boards for Neurocare and EBNeuro; and is listed as an inventor on several issued and pending patents on noninvasive brain stimulation applications in the field of neurology.

 

Abstract 5  /  Presentation

Cross analysis of literature and clinical guidelines regarding psychiatric electroceutical interventions (PEIs) with practical concerns of psychiatrists

Eleni Varelas, Robyn Bluhm, Eric Achtyes, Aaron M. McCright, Laura Y. Cabrera   / Contact: [email protected]
1. Michigan State University 2. Michigan State University 3. Michigan State University 4. Michigan State University 5. Penn State University;

Despite growing interest in psychiatric electroceutical interventions (PEIs) for patients with major depressive disorder, little research evaluates the relationship between ethical concerns discussed in the available literature and those of practicing psychiatrists. We reviewed the neuroethics literature and available clinical guidelines focused on electroconvulsive therapy (ECT), transcranial magnetic stimulation (TMS) and deep brain stimulation (DBS). We cross-analyzed our results from these reviews with results from our semi-structured interviews with 16 psychiatrists across Michigan about their views and concerns about these PEIs, as well as their views on what elements should be included in clinical guidelines on PEIs. Our cross-analysis showed two key areas reinforced across all data sources: stigma and cost. Stigma was referenced, in particular in regard to ECT. Two factors contributing to the negative perceptions of electroceuticals addressed in both the neuroethics literature and our interviews are negative depictions in literature and film, including notable examples such as ‘One Flew Over the Cuckoo's Nest,' and the controversial history of psychosurgery. Interviewed psychiatrists specifically noted stigma as their main concern when discussing barriers to treatment. Clinical guidelines also mentioned stigma to stress how these technologies continue to be perceived. Secondly, both the neuroethics literature and our interviews suggest that the burden of expenses, in particular for implantable PEIs when and if they are approved, may prevent patients from accessing these types of electroceuticals. Psychiatrists highlighted insurance coverage as a barrier for patients considering TMS. Finally, a point of divergence was the fact that while the clinical guidelines literature does extensively cover patient eligibility criteria and when to employ approved PEIs, we found that both the neuroethics literature and interviews with psychiatrists reflect that there is still uncertainty when it comes to patient selection as well as sequencing in treatment. Overall, our analysis suggests an education gap in terms of information that affects how psychiatrists use and view ECT and TMS. Our next steps include the integration of our results presented here with those of a nationally representative survey to inform the development of an analytic map that will address gaps in the literature and their implications for clinical practice - an important step towards the responsible development of these interventions for patients.

References:

None

Disclosure: Dr. Achtyes has served on advisory boards for Alkermes, Janssen, Lundbeck/Otsuka, Neurocrine Biosciences, Sunovion and Teva. Dr. Achtyes has received research support from Alkermes, Astellas, Biogen, Boehringer-Ingelheim, InnateVR, Janssen, National Network of Depression Centers, Neurocrine Biosciences, Novartis, Otsuka, Pear Therapeutics, and Takeda.

 

Abstract 6  /  Presentation

Continued access in experimental deep brain stimulation research: Researcher and participant perspectives

Gabriel Lázaro-Muñoz (1), Michelle Pham (1), Kristin Kostick (1), Katrina A. Muñoz (1), Clarissa Sanchez (1), Laura Torgerson (1), Rebecca Hsu (2), Lavina Kalwani (3), Richa Lavingia (1), Demetrio Sierra-Mercado (1,4), Jill O. Robinson (1), Simon Outram (5), Barbara A. Koenig (5), Philip A. Starr (5), Kelly D. Foote (6), Aysegul Gunduz (6), Michael Okun (6), Stacey Pereira (1), Wayne K. Goodman (1), Amy L. McGuire (1), Peter Zuk (1,3)   / Contact: [email protected]
1. Baylor College of Medicine; 2. University of Washington; 3. Rice University; 4. Department of Anatomy & Neurobiology, University of Puerto Rico School of Medicine; 5. University of California, San Francisco; 6. University of Florida;

Background: Treatment-resistant participants who benefit from experimental brain implants in the United States are generally not ensured continued access and maintenance of devices at the end of trials. Post-trial obligations have been extensively examined in the context of drug trials, but there is a dearth of empirical examination of stakeholder perspectives about these obligations in the rapidly growing field of implantable neural device research, and there are no published guidelines.

Methods: In-depth, semi-structured interviews were conducted with researchers (n=23) working on experimental deep brain stimulation (DBS) trials, and participants (n=21) before and 6 months after surgery to manage Parkinson, dystonia, essential tremor, obsessive-compulsive disorder, or Tourette. Interview transcripts were analyzed using thematic content analysis.

Results: Researchers (11/23:48%) expressed concern about how continued access to brain implants is currently managed. Three main barriers were identified to ensure continued access: cost (9/23:39%), regulations (5/23:22%), and limited access to post-trial clinical and technical expertise (4/23:17%). Some researchers (4/23:17%) noted that participants may have difficulty understanding the implications of not having ways to ensure continued access during the consent process. Most (15/23:65%) suggested that insurance should cover some costs of continued access if the device benefits the participant. Others suggested making continued access part of research budgets (5/23:22%) or having device manufacturers cover some cost.

In pre-surgery interviews, few participants (6/21:29%) remembered having discussed continued access during the consent process, although this was addressed in all studies. Most participants (16/21:76%), stated a desire to keep the device if it was providing benefit. When asked how post-trial maintenance should be paid, most (11/21:52%) stated that insurance should cover part or all of the expenses. Participants also mentioned other groups who could cover costs: patient themselves (4/21:19%), the clinical trial (2/21:10%), and device manufacturers (2/21:10%).

Preliminary analyses of 6-month post-surgery interviews (n=18) show that more participants (11/18:61%) remembered having discussed continued access with the study team at some point during the study. When asked how continued access and maintenance of the device should be paid for, a lower proportion (6/18:28%) mentioned insurance, and a higher proportion identified device manufacturers (8/18:44%) compared to pre-surgery responses.

Conclusion: Current management of continued access in this context is a challenge in need of attention. Findings from this study suggest that participants have a desire to keep devices if beneficial; that few participants remember discussing post-trial management during the consent process; and that researchers have concerns about current continued access management.

References:

None

Disclosure: None

 

Abstract 7  /  Presentation  /  TOP ABSTRACT (AJOB NEUROSCIENCE)

AJOB Neuroscience cover title

Top Abstract

The spectrum of data sharing policies in neuroimaging data repositories

Anita S. Jwa (1), Russell A. Poldrack (2)   / Contact: [email protected]
1. Department of Psychology, Stanford University; 2. Department of Psychology, Stanford University;

Sharing data is a scientific imperative that accelerates scientific discoveries, reinforces open science inquiry, and allows for efficient use of public investment and research resources. But for all its promise, the sharing of human neuroimaging data raises critical ethical and legal concerns, such as the privacy of subjects and confidentiality of data (Brakewood & Poldrack, 2013; Poline et al., 2012). In the United States, a multitude of federal and state regulations and policies provide protections for human subjects' identities and other sensitive information, including de-identification of data. However, recent advancements in artificial intelligence and machine learning techniques to re-identify neuroimaging datasets have posed heightened risks to data privacy and made data sharing more challenging. Understanding actual practice of neuroimaging data sharing in the field would shed light on the impact of these novel privacy risks and the adequacy of the current regulatory regime.

Through a survey on data use agreements and data sharing policies in existing neuroimaging data repositories, this article presents an in-depth ethical and regulatory analysis of how neuroimaging data is currently shared against the backdrop of the relevant regulations and how advanced software tools and algorithms might undermine subjects' privacy in neuroimaging data sharing. The survey showed that these repositories have already developed varying levels of access control and limitations on the subsequent use of data, even de-identified, depending on the sensitivity of data and other relevant factors (e.g., whether original contributors still retain some control over shared data or whether a federal agency, such as NIH or FDA, is involved as a governing body of a repository). But given that it is currently under researchers' discretion to decide where and how to share data (Ross et al., 2018), it would be desirable for researchers to have some guidelines to adopt that promote more responsible sharing of neuroimaging data. Moreover, although still at an exploratory stage, recent studies on novel software tools and algorithms, such as facial reconstruction or MRI fingerprinting (Abramian & Eklund, 2019; Ravindra and Grama, 2019), have shown that any rigorously de-identified data sets may still contain some risks of re-identification. Here we propose that this remaining risk of re-identification would be best addressed by introducing regulatory safeguards to prevent the misuse of information collected or disclosed as part of a research study, similar to the safeguard in Genetic Information Non-Discrimination Act in the United States.

References:

  • Abramian D. & Eklund A. (2019). Refacing: reconstructing anonymized facial features using GANs. 2019 IEEE 16th International Symposium on Biomedical Imaging (ISBI 2019), 1104-1108, doi: https://doi.org/10.1101/447102
  • Brakewood, B., & Poldrack, R. A. (2013). The ethics of secondary data analysis: considering the application of Belmont principles to the sharing of neuroimaging data. Neuroimage, 82, 671-676. doi:10.1016/j.neuroimage.2013.02.040
  • Poline, J. B., Breeze, J. L., Ghosh, S., Gorgolewski, K., Halchenko, Y. O., Hanke, M., . . . Kennedy, D. N. (2012). Data sharing in neuroimaging research. Front Neuroinform, 6, 9. doi:10.3389/fninf.2012.00009
  • Ravindra, V & Grama, A. (2019). De-anonymization attacks on neuroimaging datasets, arXiv:1908.03260.
  • Ross, M. W., Iguchi, M. Y., & Panicker, S. (2018). Ethical aspects of data sharing and research participant protections. Am Psychol, 73(2), 138-145. doi:10.1037/amp0000240

Disclosure: None

 

Abstract 8  /  Presentation

Modeling complex prosocial behavior: Robustness and neuroethics in translational rodent experiments

Gordon H. Dash (1), Nina Kajiji (2), S. Tiffany Donaldson (3)   / Contact: [email protected]
1. University of Rhode Island, USA; 2. University of Rhode Island, USA; 3. University of Massachusetts at Boston, USA;

Exposure to prosocial models is commonly used to foster prosocial behavior in various domains of society. Although their translational value has been challenged in several cases, rodents, in particular Long Evans rats, are invaluable when modeling the context of human behavior in alternate environments. Rodent models are chosen for convenience, e.g., availability rather than neurotechnologically enabled neurosurgical interventions involving the human brain (Giordano 2015). Apart from a general discussion on translational success or failure, the complex bidirectional process involving multidisciplinary research integration often requires new data science methods. A contributor to this innovation is the synergetic effect of the intersection of neuroscience and artificial intelligence (AI). But the new AI data science race comes with benefits and the potential for harm.

This paper examines robust nonlinear AI modeling of trait-bred anxiety in Long Evans rats. Translation to human prosocial behavior is a desired outcome. As in the human model, anxious animals exhibit anxiety disorders leading to anti-social behaviors. Based on a data obtained from a recently completed rodent study (Liu et al. 2018), we measure neural activation of anxious rats by sex along the reward and fear neural circuitry by capturing c-fos protein levels in seven left-and-right brain regions. Implicated by rearing environment – isolated v/s small-group – this research uses a radial basis function (RBF) artificial neural network (ANN), or RANN, to map nonlinear regression weights of the neural pathways (for a RANN topical survey, see C. Dash et al. (2016)). Because ANNs are not ethically neutral (Tsamados et al. 2021), the translational benefit of using a RANN to measure the environmental welfare of rats comes with some ethical risks. The objective of this research is to clarify whether the available epistemic factors of ANN models are sufficient to warrant a belief in the reported accuracy of estimated solution weights. Because translational research projects depend on the ethical justification of the informatics deployed to connect discipline-based results (Hulsen 2019), our research focuses on the ethical impact of neural data science in a rodent study. We present robust experimental results that point to the importance of algorithmic parameter setting. Current results are contrasted with extant research to demonstrate how a failure to provide transparency in modeling parameters could lead to wrong and potentially harmful policy decisions in prosocial urban housing apartment assignment (G. H. Dash et al. 2017).

References:

  • Dash, G. H., N. Kajiji, S. T. Donaldson. 2017. "SMART City” Sustainability: How animal behavior contributes to prosocial apartment assignments. Paper presented at the Advancing Frontiers in OR: Towards a Sustainable World, Operational Research Society of India, Kolkata.
  • Giordano, J. 2015. A preparatory neuroethical approach to assessing developments in neurotechnology. American Medical Association Journal of Ethics, 17(1) 56-61.
  • Hulsen, T. 2019. The ten commandments of translational research informatics. Data Science, 2(1-2) 341-352.
  • Liu, J., J. Scira, S. Donaldson, N. Kajiji, G. H. Dash, S. T. Donaldson. 2018. Sex and trait anxiety differences in psychological stress are modified by environment. Neuroscience, 383 178-190.
  • Tsamados, A., N. Aggarwal, J. Cowls, J. Morley, H. Roberts, M. Taddeo, L. Floridi. 2021. The ethics of algorithms: Key problems and solutions. AI & Society. doi:https://doi.org/10.1007/s00146-021-01154-8

Disclosure: None

 

Abstract 9  /  Presentation

A literature review and ethical examination of epilepsy surgery’s 'last resort’ status: an outdated rhetorical device?

Ian M. Stevens, BA/BS(1) & Ahmed M. Raslan, MD(2)   / Contact: [email protected]
1. University of Tasmania, Philosophy & Gender Studies, Hobart, Tasmania, AUS; 2. Oregon Health & Science University, Neurological Surgery, Portland, Oregon, USA

Since the turn of the 20th century when it was considered an alternative therapy, the surgical treatment of epilepsy has been present for over a hundred years. In particular, the past few decades have seen surgical treatments for epilepsy disorders that are resistant to traditional anti-epileptic medications, referred to as drug-resistant epilepsy, grow as an established therapy (i.e., the anterior temporal lobectomy).(1) Despite the evidence of epilepsy surgery's efficacy, it has been severely underutilized with only an estimated 1% of the drug-resistant patient population receiving it.(2,3) One justification for this that is cited in the literature has been how surgery continues to be incorrectly perceived as an intervention of ‘last resort'.(4) To address this misconception, some have recommended for the education of primary care providers, neurologists, and the public at large. A crucial aspect of this endeavor, that has had little to no attention thus far, revolves around defining what specifically is meant by the ‘last resort' status referred to in the literature.(5) That is, given epilepsy surgery includes neurostimulatory, resective and ablative modalities, how each therapy themselves should not be considered a ‘last resort' treatment has not been addressed. Therefore, in order to help clinicians combat the outdated perceptions of epilepsy surgery, a near exhaustive literature review of peer-reviewed publications implementing the phrasing "last resort" is underway to contextualize its various uses and implied meanings. Once completed, analyzing the qualitative and quantitative findings should provide defined characteristics of the ‘last resort' status in reference to epilepsy surgery. These characteristics can then be utilized to assist clinicians in accurately communicating to medical students, community providers, and patients how the various epilepsy surgeries do not fall underneath the ‘last resort' status as opposed to, for example, most contemporary psychiatric surgeries.

References:

  1. Engel J. Evolution of concepts in epilepsy surgery. Epileptic Disord Int Epilepsy J Videotape. 2019 Oct 1;21(5):391–409.
  2. Engel J. Finally, a Randomized, Controlled Trial of Epilepsy Surgery. N Engl J Med. 2001 Aug 2;345(5):365–7.
  3. Engel J. Why is there still doubt to cut it out? Epilepsy Curr. 2013 Sep;13(5):198–204.
  4. Braun KPJ, Cross JH. Pediatric epilepsy surgery: the earlier the better. Expert Rev Neurother. 2018 Apr;18(4):261–3.
  5. Heath G, Abdin S, Begum R, Kearney S. Putting children forward for epilepsy surgery: A qualitative study of UK parents’ and health professionals’ decision-making experiences. Epilepsy Behav. 2016 Aug 1;61:185–91.

Disclosure: AMR discloses receiving NIH funding for the study of epilepsy. IMS no disclosures.

 

Abstract 10  /  Presentation

Online comments about DBS for opioid addiction: Public perceptions and concerns

1. Jack Koczara 2. Dr. Robyn Bluhm, Ph.D. 3. Dr. Laura Y. Cabrera, Ph.D.   / Contact: [email protected]
1. Michigan State University, College of Natural Science, 2. Department of Philosophy and Lyman Briggs College, Michigan State University, 3. The Pennsylvania State University, Dept. Engineering Science and Mechanics, Center for Neural Engineering and Rock Ethics Institute

Background: Opioids have been at the forefront of pain relief in the medical field since the 1990s, but they are addictive. As part of the quest to find alternative treatments, deep brain stimulation (DBS) has been proposed as a potential alternative, with a number of clinical trials around the world focused on determining its safety and efficacy for opioid addiction. The use of DBS in psychiatry comes with ethical considerations, in addition to concerns specific to its use for addiction (Carter et al., 2011). However, compared to the neuroethics literature covering the use of DBS for other psychiatric disorders, very little has been written about DBS for opioid addiction. Furthermore, no studies have specifically evaluated the public perception of the use of DBS as a treatment for opioid addiction. Our goal is to address this gap in the literature, by examining public comments on an online newspaper article covering the use of DBS for opioid addiction.

Methods: Our sample consisted of 146 public comments that were posted in the comment section of the Washington Post piece "Deep brain stimulation is being tested to treat opioid addiction" (Bernstein, 2019). Comments were coded using qualitative content analysis in order to identify readers' main perceptions and concerns.

Results: We found a wide range of perceptions and concerns about the use of DBS as a treatment for opioid addiction. The most commonly raised ethical issues were the allocation of resources to this therapy and concerns about the scientific validity of the treatment. Of the 101 relevant comments, more commenters (36.63%) expressed a controversial position on the use of DBS to treat opioid addiction, while (16.83%) reported a cautionary perspective. Overall, our results suggest that some members of the public are reluctant to trust technology that is not yet fully understood on the physiological level, and which might exacerbate social justice concerns. Others seem hopeful about the potential to find a treatment for an epidemic that has plagued society for decades but are cautionary until more is known.

Conclusion: It is of utmost importance for policymakers, healthcare professionals, and researchers to address misperceptions and concerns around the use of DBS for addition as well as around addiction itself to ensure the responsible testing and potential future use of DBS for opioid addiction.

References:

  • Bernstein, L. 2019. Deep brain stimulation is being tested to treat opioid addiction. The Washington Post.
  • Carter A, Bell E, Racine E, Hall W. 2011. Ethical Issues Raised by Proposals to Treat Addiction Using Deep Brain Stimulation. Neuroethics. 4:129-142.

Disclosure: None

 

Abstract 11  /  Presentation

The Need for Preservation of Medical Decision Making with Diminished Cognitive Capacity

1. Jennifer Jin, 2. Gillian Hue   / Contact: [email protected]
1. Emory University, 2. Emory University

As a result of an aging world population, Alzheimer's Disease and other neurodegenerative dementias are reaching epidemic proportions. Progression of such diseases can lead to deficits in independent decision-making capacity, which calls into question any impaired individual's ability to make sound medical decisions. In our limited qualitative assessment, various themes emerged indicating that generally, people need more time with diagnostic information to make lifestyle decisions and implement necessary changes that best fit the impacted individuals and their families (Jin 2021). We found that impacted individuals and their families were not being equipped with important information needed to make such big decisions. This can create tension and distrust between the stakeholders involved but can be easily remedied by placing a greater emphasis on notifying patients early enough with the necessary information regarding their diagnosis and prognosis to process through them and discuss with their families on how to move forward.

Notifying individuals earlier of their diagnosis could help to empower them by giving them the opportunity to make their own decisions without having their decision-making capacity questioned due to the potential onset of cognitive impairments. We oftentimes take medical agency away from those impacted by Alzheimer's Disease because of cognitive effects that deteriorate a manifold of executive functions. However, exercising agency implies intentionality and individuality in decision making, which contributes to defining one's sense of self and living autonomously. Because we often assign identity, value, and worth to our right to autonomy; taking medical agency away from someone can potentially interfere with their identity and diminish their own worth. Furthermore, despite their diminished cognitive capacities, individuals with Alzheimer's Disease still desire to preserve their autonomy. They still have personal desires and wishes that they would like to express and enact. Thus, we must understand the importance of developing a deeper understanding of a diversity of stakeholder perspectives, while also providing an opportunity for affected persons and their caregivers to learn about the importance on medical agency in their lives and introduce their viewpoint in the broader perspective to protect their individual right to autonomy and capacity to make their own decisions.

References:

  • Jin, J. 2021. A Case Study of Opinions on Medical Agency in Alzheimer’s Disease and Alzheimer’s Disease Related Dementias (AD/ADRD). Undergraduate honors thesis, Emory College of Arts and Sciences. https://etd.library.emory.edu/concern/etds/0g354g62j?locale=en

Disclosure: None

 

Abstract 12  /  Presentation  /  TOP ABSTRACT (AJOB NEUROSCIENCE)

AJOB Neuroscience cover title

Top Abstract

A brain organoid created from my cells? Perspectives of potential donors to brain organoid research

Kate MacDuffie (1,2), Benjamin Wilfond (1,2), Ishan Dasgupta (1), Andreas Schönau (1), Sara Goering (1), Eran Klein (1,3)   / Contact: [email protected]
1. University of Washington, 2. Seattle Children’s Hospital and Research Institute, 3. Oregon Health and Science University

Brain organoids are multicellular, three-dimensional structures derived from induced pluripotent stem cells that originate from donated biospecimens (blood or skin cells). Brain organoids provide in-vitro models of brain development or degeneration and are amenable to gene editing and drug treatment, creating the potential to advance precision medicine. Brain organoid technology has existed for almost a decade,1 and neuroethics scholars have identified ethical questions that should be addressed as the technology develops.2-4 Yet little is known about donor perspectives and attitudes regarding the use of their biospecimens to create brain organoids. This empirical neuroethics project seeks to address that gap in knowledge.

We conducted semi-structured qualitative interviews with 24 potential donors to brain organoid research. Interviewees either had or were at risk for mild cognitive impairment and responded to an invitation to participate in a research study of attitudes towards neurotechnology and dementia. Importantly, interviewees were not current participants in brain organoid research, but represent a biological risk group likely to be recruited to donate biospecimens in the future. Interviews were conducted via videoconference software, recorded, transcribed, and coded using an exploratory inductive approach.

Preliminary analyses revealed four major themes. Potential donors 1) did not anticipate feeling personal attachment or ownership over brain organoids created from their cells, 2) endorsed the appropriateness of broad consent for biospecimen donation, with some limits (e.g., defined scope of research activities or time limit for use), 3) trusted biomedical researchers with brain organoid stewardship, but were less comfortable with industry partners (i.e., pharmaceutical companies) generating profit from their donation, and 4) preferred identified vs. deidentified use of biospecimens to preserve their potential to receive personal health-related results.

These initial results stand in contrast to prior work with donors to cystic fibrosis research, some of whom described feeling personally attached to intestinal organoids created from their cells.5 It may be the hypothetical nature of our questions led participants to imagine more psychological distance towards brain organoids than they would feel after donating. Ongoing data collection includes interviews with current donors to brain organoid research targeting Alzheimer's disease, autism spectrum disorder, and Joubert syndrome. Future work will gather perspectives from a broader group of stakeholders who represent more diverse racial, ethnic, religious and educational backgrounds. Our long-term goal is to help ensure that the creation, management and clinical application of donor-derived brain organoids can proceed in accordance with donor beliefs and values.

References:

  1. Lancaster MA, Renner M, Martin C-A, et al. Cerebral organoids model human brain development and microcephaly. Nature. 2013;501(7467):373-379. doi:10.1038/nature12517.
  2. Hyun I, Scharf-Deering JC, Lunshof JE. Ethical issues related to brain organoid research. Brain Res. 2020;1732:146653. doi:10.1016/j.brainres.2020.146653.
  3. Farahany NA, Greely HT, Hyman S, et al. The ethics of experimenting with human brain tissue. Nature. 2018;556(7702):429-432. doi:10.1038/d41586-018-04813-x.
  4. Greely HT. Human Brain Surrogates Research: The Onrushing Ethical Dilemma. Am J Bioeth. 2021;21(1):34-45. doi:10.1080/15265161.2020.1845853.
  5. Boers SN, de Winter-de Groot KM, Noordhoek J, et al. Mini-guts in a dish: Perspectives of adult Cystic Fibrosis (CF) patients and parents of young CF patients on organoid technology. J Cyst Fibros. 2018;17(3):407-415. doi:10.1016/j.jcf.2018.02.004.

Disclosure: None

 

Abstract 13  /  Presentation  /  TOP ABSTRACT (AJOB NEUROSCIENCE)

AJOB Neuroscience cover title

Top Abstract

Pressing ethical issues in considering pediatric deep brain stimulation for obsessive-compulsive disorder

Katrina A. Muñoz [1], Kristin Kostick [1], Laura Torgerson [1], Peter Zuk [1], Lavina Kalwani [2], Clarissa Sanchez [3], Jennifer Blumenthal-Barby [1], Eric A. Storch [1, 4], Gabriel Lázaro-Muñoz [1]   / Contact: [email protected]
1. Center for Medical Ethics and Health Policy, Baylor College of Medicine; 2. Department of Biosciences, Rice University; 3. Department of Neurology, Baylor College of Medicine; 4. Department of Psychiatry and Behavioral Sciences, Baylor College of Medicine

Refractory obsessive-compulsive disorder (OCD) among adults is the first psychiatric indication of deep brain stimulation (DBS) to receive an FDA Humanitarian Device Exemption (HDE). Given the HDE approval and encouraging evidence that has since emerged, exploration of DBS for OCD may expand to adolescents in the future. More than 100,000 adolescents in the U.S. suffer from refractory OCD and could potentially benefit from DBS. Moreover, there is already a precedent for the transition of DBS in adults to children in the case of pediatric DBS for dystonia, which is available on an HDE basis for children ≥7 years old. However, the risk-benefit analysis of pediatric DBS for OCD may be more complex and raise different ethical questions compared to pediatric DBS for dystonia. In an effort to identify and anticipate potential ethical concerns, we interviewed clinicians (n=25) who care for pediatric patients with refractory OCD to gain insight into the most pressing ethical issues related to offering pediatric DBS for OCD. Using thematic content analysis, five central themes were identified in clinician responses, three of which were exacerbated in the pediatric compared to adult DBS setting. Clinicians expressed concern related to conditions of decision-making, including patients' capacity to assent and ensuring that families are properly informed (80%). Clinicians discussed the lack of evidence about the outcomes and potential unknown effects of using pediatric DBS for OCD, including effects on brain development (68%). They also stressed the importance of patients exhausting all other treatments options and demonstrating refractory status before considering pediatric DBS, which they felt may be particularly challenging for pediatric patients (20%). Additionally, clinicians discussed two potential issues relevant to both pediatric and adult DBS, including concerns about managing clinician bias and conflicts of interest (28%) and barriers in access to DBS (24%). We contextualize these findings within the clinical and ethics literature and propose potential strategies to address these issues, including the implementation of validated decision support tools as well as further research into the outcomes of pediatric DBS for OCD in order to establish clear guidelines for patient selection.

References:

  • Ashkan, K., Mirza, A.B., Tambirajoo, K., & Furlanetti, L. (2020). Deep brain stimulation in the management of paediatric neuropsychiatric conditions: Current evidence and future directions. European journal of paediatric neurology: official journal of the European Paediatric Neurology Society, S1090-3798(20)30188-4. https://doi.org/10.1016/j.ejpn.2020.09.004
  • de Haan, S., Rietveld, E., Stokhof, M., & Denys, D. (2015). Effects of Deep Brain Stimulation on the Lived Experience of Obsessive-Compulsive Disorder Patients: In-Depth Interviews with 18 Patients. PloS One, 10(8),e0135524–e0135524. https://doi.org/10.1371/journal.pone.0135524
  • Husted, D.S., & Shapira, N.A. (2004). A review of the treatment for refractory obsessive-compulsive disorder: from medicine to deep brain stimulation. CNS spectrums, 9(11),833–847. https://doi.org/10.1017/s109285290000225x
  • International Patient Decision Aid Standards (IPDAS) Collaboration IPDAS 2005: Criteria for Judging the Quality of Patient Decision Aids. www.ipdas.ohri.ca.
  • Muñoz, K., Blumenthal-Barby, J., Storch, E., Torgerson, L., & Lázaro-Muñoz, G. (2020). Pediatric Deep Brain Stimulation for Dystonia: Current State and Ethical Considerations. Cambridge Quarterly of Healthcare Ethics, 29(4),557–573. https://doi.org/10.1017/S0963180120000316

Disclosure: None

 

Abstract 14  /  Presentation

Physician perspectives on closed-loop neuromodulation in epilepsy care

Kristina Celeste Fong, Tobias Haeusermann, Cailin Lechner, Alissa Bernstein Sideman, Winston Chiong, Dan Dohan   / Contact: [email protected]
University of California San Francisco

The development of closed-loop neurostimulation technologies for neurologic and psychiatric treatment has been a priority of the BRAIN Initiative, and the implications of such devices have animated neuroethics discussion. Responsive neurostimulation (RNS) has been commercially available as a therapy for refractory epilepsy since 2013, providing both patients and clinicians with real-world clinical experience of closed-loop stimulation. In prior work we have interviewed patients regarding their RNS experiences; for this study we sought insight into clinicians' experiences with the RNS, including views on the social and ethical implications of this still novel technology.

Participants were 8 epileptologists who practice at epilepsy centers across the country. We conducted a single open ended, semi-structured interview with each epileptologist in which we discussed their clinical background, epilepsy practice, and experience with the RNS device. Interviews were audio recorded, transcribed, and imported into ATLAS.ti software for analysis. We identified 4 themes: 1) Clinicians' management of the RNS device necessitated complex and varying forms of interdisciplinary collaboration with the device manufacturer and its engineers. 2) Epileptologists often had to navigate between their own clinical expertise and the electrical data produced by the device to guide patients' epilepsy care. 3) Clinicians' evaluations of RNS eligibility compared to other surgical interventions included particular considerations that could hinder access for some patient groups. 4) The device's closed-loop capabilities produced differing approaches to patient-physician communication with respect to data management, managing patient expectations and clinician obligations. Our interviews highlight the unanticipated technical demands of closed-loop devices, underscore the centrality of ongoing relationships between clinicians and industry, and affirm the need for further research concerning patient access to novel neurotechnologies.

References:

None

Disclosure: None

 

Abstract 15  /  Presentation  /  TOP ABSTRACT (AJOB NEUROSCIENCE)

AJOB Neuroscience cover title

Top Abstract

"Retraining your brain": An empirical assessment of ethical concerns and attitudes of users of electroencephalography neurofeedback

Louiza Kalokairinou 1, Ashwini Nagappan 1, Rebekah Choi 1, Anna Wexler 1   / Contact: [email protected]
1. University of Pennsylvania

Background: Complementary and alternative (CAM) medicine raises ethical concerns regarding the appropriate balance between patient autonomy and protection from harm. One example of an ethically controversial CAM technique is electroencephalography (EEG) neurofeedback, a type of biofeedback that purportedly teaches users how to self-regulate their brainwaves (1). Although neurofeedback is currently offered by thousands of providers worldwide (2), its provision is contested, as its effectiveness beyond a placebo effect is unproven (1,3). Scholars have expressed concerns that exaggerated marketing claims by providers could mislead consumers regarding the potential of such services and result in opportunity cost from foregoing standard-of-care treatments (4). To-date, however, concerns regarding the risk-benefit trade-offs have largely remained theoretical, as there is a lack of data regarding the characteristics of users and their views on these services.

Objective: To examine the demographics, experiences, and attitudes of those who use neurofeedback services and/or purchase neurofeedback devices for home use.

Methods: Neurofeedback users were recruited via social media (Facebook and Twitter) between August 2020 and February 2021, and invited to participate in a 30-minute semi-structured telephone interview. Subjects were compensated with a $20 Amazon e-gift card. All interviews were transcribed and analyzed thematically by two coders according to the principles of grounded theory (5).

Results: The majority of respondents (N=36) were female (75%), white (92%), and of higher socioeconomic status relative to the U.S. population. Most (86%) considered neurofeedback to provide good value for money. Respondents reported benefits including symptom and performance improvement, as well as emotional and interpersonal benefits; unwanted effects included headaches, panic attacks, and irritability. Most respondents (78.8%) resorted to EEG neurofeedback after having tried other therapeutic options for themselves. The majority (61.1%) considered neurofeedback to be a scientifically well-established therapy. However, of those, 77.3% were using neurofeedback for indications not supported by scientific evidence.

Conclusion: As neuroscience-based digital health interventions become more widespread, it is increasingly important to consider the perspectives of users to better understand the real-world application of these interventions. The present study presents the first consideration of the perspectives of neurofeedback users. Our results suggest that for most users, the benefits outweighed the risks—even though some reported utilizing neurofeedback for indications for which there is little evidence of efficacy. However, our results also indicate that users may overestimate the scientific validity of the therapy and that there may be a wide range of unwanted effects (albeit temporary) that should be studied in a systematic way.

References:

  1. Marzbani, H., Marateb, H. R. & Mansourian, M. Neurofeedback: A Comprehensive Review on System Design, Methodology and Clinical Applications. Basic Clin Neurosci 7, 143–158, 2016.
  2. ISNR. In Defense of Neurofeedback. ISNR https://isnr.org/in-defense-of-neurofeedback, 2017.
  3. Thibault, R. T. & Raz, A. The psychology of neurofeedback: Clinical intervention even if applied placebo. American Psychologist 72, 679–688, 2017.
  4. Nagappan, A., Kalokairinou, L. & Wexler, A. Ethical and Legal Considerations of Alternative Neurotherapies. American Journal of Bioethics-Neuroscience, 2021.
  5. Tie, Y. C., Birks, M. & Francis, K. Grounded theory research: A design framework for novice researchers. Sage Open Medicine 7, 2019.

Disclosure: None

 

Abstract 16  /  Presentation

Coverage of medical cannabis by mainstream and alternative Canadian news media: Implications for neuroethical inquiry

1 Margot Gunning; 1 Alissa Wong; 1 Judy Illes   / Contact: [email protected]
1. Neuroethics Canada, Division of Neurology, Department of Medicine, University of British Columbia, 2211 Westbrook Mall, Koerner S124, Vancouver, BC V6T 2B5, Canada

Background

The legalization of recreational cannabis in Canada in 2018 opened the doors to increased use that also spanned neurologic and mental health conditions (1-4). We examined messaging surrounding medical cannabis in mainstream (5) and alternative Canadian news media before and after legalization to understand this phenomenon that continues to be simultaneously over and under regulated.

Methods

We retrieved articles from mainstream and alternative Canadian news sources (2010-2020). Deductive and inductive content analytic methods were applied to code eligible articles for a priori ethical, legal, social, and issues, and emergent themes. Chi Square and Fischer Exact tests were used to test for associations between article source and thematic codes. Wilcoxon-Mann-Whitney U-tests were used to test for thematic changes pre- and post-legalization.

Results

Three hundred and sixty-eight (368) articles met inclusion criteria (216 mainstream; 152 alternative). Analysis yielded three themes and eight subthemes. The a priori theme of Ethical, Legal and Social Issues (access, benefit and risk, public engagement and conflict of interest) was the main focus of coverage in both mainstream (99%), and alternative (92%) articles, although significantly less in alternative compared to mainstream news (Fischer p value= 0.001; odds ratio = 9.1). Access was the dominate ethical, legal and social subtheme (96% of mainstream articles; 79% of alternative news articles). Significantly more mainstream articles discussed access factors (χ2(1) = 26, p < .01). The theme of Medical Applications (therapeutic use, consumption considerations, comparisons to other drugs) was also discussed significantly more in mainstream (86%) compared to alternative news articles (72%) (χ2 (1) = 8.2, p < .01), as was the theme of Resource Issues (research and education; 50% mainstream; 30% alternative; χ2 (1) = 13.8, p < .01). Mainstream coverage of access issues declined significantly post-legalization (U(Npost=12, Npre=204)=27, p<0.01).

Conclusion

Capturing multiple formats of news media coverage on medical cannabis is a powerful and essential means of understanding how public opinions and public policy are shaped on matters of brain health and more broadly. Continued examination of the issues surrounding medical cannabis, and the understanding of views of diverse populations – people with disabilities, and from different cultures and age groups – that are expressed through alternate news media, are critical steps forward.

References:

  1. Cox C. The Canadian Cannabis Act legalizes and regulates recreational cannabis use in 2018. Health Policy. 2018 Mar;122(3):205–9.
  2. Cox C. Implications of the 2018 Canadian Cannabis Act: Should regulation differ for medicinal and non-medicinal cannabis use? Health Policy. 2021 Jan 1;125(1):12–6.
  3. Gibbard M, Mount D, Rassekh SR, Siden H (Hal). Family attitudes about and experiences with medical cannabis in children with cancer or epilepsy: an exploratory qualitative study. CMAJ Open. 2021 Jan 4;9(2):E563–9.
  4. Walsh Z, Gonzalez R, Crosby K, S Thiessen M, Carroll C, Bonn-Miller MO. Medical cannabis and mental health: A guided systematic review. Clin Psychol Rev. 2017 Feb;51:15–29.
  5. Gunning M, Illes J. Coverage of medical cannabis by Canadian news media: Ethics, access, and policy. Int J Drug Policy. 2021 Nov 1;97:103361.

Disclosure: None

 

Abstract 17  /  Presentation  /  TOP ABSTRACT (AJOB NEUROSCIENCE)

AJOB Neuroscience cover title

Top Abstract

Harm reduction as an ethics priority for authorizing medical cannabis in the care of youth with brain and non-brain cancers

1 Margot Gunning;1 Ari D. Rotenberg;2 Lauren E Kelly;3 Bruce Crooks;4 Sapna Oberoi;5, 6 Adam L. Rapoport;7 S. Rod Rassekh;1 Judy Illes;   / Contact: [email protected]
1 Neuroethics Canada, Division of Neurology, Department of Medicine, University of British Columbia, Vancouver, British Columbia, Canada 2 Department of Pediatrics and Child Health, University of Manitoba, George & Fay Yee Centre for Healthcare Innovation, Winnipeg, Manitoba, Canada 3 Department of Pediatrics, Division of Hematology-Oncology, IWK Health Centre, Dalhousie University, Halifax, Nova Scotia, Canada 4 Department of Pediatric Haematology-Oncology, CancerCare Manitoba, Canada 5 Departments of Paediatrics and Family & Community Medicine, Faculty of Medicine, University of Toronto, Toronto, Ontario, Canada 6 Emily’s House Children’s Hospice, Toronto, Ontario, Canada 7 Department of Pediatrics, Division of Pediatric Hematology/Oncology/BMT, University of British Columbia, Vancouver , British Columbia, Canada;

Background

The use of cannabis for medical purposes in paediatric patient populations is expanding across Canada (1–3). Little is known about the perspectives of clinicians operating in this landscape that lacks both supporting evidence for many medical conditions, including brain cancers, and federal and local regulations (1,4).

Methods

We conducted English-language semi-structured interviews with Canadian clinicians practicing in areas related to paediatric medicine including neurology, palliative care, and oncology. Interviews were recorded, transcribed, and analyzed using deductive and inductive thematic methods. A priori themes related to medical, professional, regulatory, evidentiary and social considerations for authorization of medical cannabis to youth and children.

Results

We conducted eighteen (18) interviews. Analysis yielded four overarching a priori and emergent themes, and twelve subthemes. The four themes of access, relational autonomy, medically appropriate use and research priorities were grounded in the principles of harm reduction. Clinicians described obstacles in accessing medical cannabis, including authorization procedures, federal and local regulations and pragmatic use by patients and their families. Principles associated with relational autonomy were highlighted by the expressed need for open and honest bidirectional communication during clinical consultation, and respect for information received from outside sources. Similar to all other treatment decisions, clinicians discussed the trade-offs of benefits and risks, including potential effects on neurodevelopment. Further, they communicated that more research is essential to achieve any form of alignment of medical cannabis with biomedical standards.

Conclusions

Canadian clinicians pursue the ethical use of medical cannabis for paediatric patients and prioritize their safety in this context under the principles of harm reduction. The continued need for the acquisition of evidence about neurodevelopmental risks and benefits, treatment guidelines for specific indications and dosing, and greater knowledge about diverse stakeholder perspectives will alleviate the burden that clinicians experience in this still largely unsupported healthcare context.

References:

  1. Gibbard M, Mount D, Rassekh SR, Siden H. Family attitudes about and experiences with medical cannabis in children with cancer or epilepsy: an exploratory qualitative study. CMAJ Open. 2021 Jan 4;9(2):E563–9.
  2. Chapman S, Protudjer J, Bourne C, Kelly LE, Oberoi S, Vanan MI. Medical cannabis in pediatric oncology: A survey of patients and caregivers. Support Care Cancer. 2021 May 1;
  3. Elliott J, DeJean D, Clifford T, Coyle D, Potter B, Skidmore B, et al. Cannabis for pediatric epilepsy: Protocol for a living systematic review. Syst Rev. 2018 Jul 18;7(1):95.
  4. Rieder M. Authorizing medical cannabis for children. Paediatr Child Health. 2020 Jun;25(Suppl 1):S14–5.

Disclosure: None

 

Abstract 18  /  Presentation  /  TOP ABSTRACT (AJOB NEUROSCIENCE)

AJOB Neuroscience cover title

Top Abstract

Psychiatric electroceutical interventions and their potential to influence personality: A cross-analysis of survey and interview results

1:Marissa Cortright, 2:Robyn Bluhm, 3:Eric Achtyes, 4:Aaron M. McCright, 5:Laura Y. Cabrera   / Contact: [email protected]
1. Neuroscience and Criminal Justice Double Major, Michigan State University; 2. Department of Philosophy, College of Arts & Letters, Lyman Briggs College, Michigan State University; 3. Division of Psychiatry & Behavioral Medicine, College of Human Medicine, Michigan State University; 4. Department of Sociology, College of Social Science, Michigan State University; 5. Center for Neural Engineering, Department of Engineering Science and Mechanics, Pennsylvania State University

Deep brain stimulation (DBS) has raised concerns about the potential for neurotechnologies to alter a patient's personality or sense of self. While the current neuroethics literature regarding this concern focuses almost entirely on DBS, little discussion has occurred about other psychiatric electroceuticals interventions (PEIs). In addition, little is known about how these perceptions differ across stakeholder groups. To better understand how concerns vary across treatment modalities and stakeholder groups, as part of an NIH-funded project, we conducted semi-structured interviews across three stakeholder groups – 16 psychiatrists, 16 patients diagnosed with clinical depression, and 16 members of the general public – to identify their perceptions of PEIs' potential effects on self. We then administered a national survey with an embedded experiment to psychiatrists (n=505), people diagnosed with depression (n=1050), caregivers (n=1026), and members of the general public (n=1025). We randomly assigned these subjects to 1 of 8 conditions across an experimental factorial design, comprised of 4 PEI modalities; [electroconvulsive therapy (ECT), transcranial magnetic stimulation (TMS), DBS, or adaptive brain implants (ABIs)]; and two degrees of depression severity [moderate or severe]. We used content analysis for our interview data and ANOVAs and logistic regressions to analyze the survey data. Here we present a cross-analysis of results related to PEIs impact on sense of self from the interviews and survey. In the interviews, there was no evidence of significant differences on changes to self by modality. However, the interviewed participants suggested that aspects of the technology such as the success or failure of the treatment, and the side effects, are important factors when considering their potential to influence self. In the survey, compared to subjects assigned to ECT, participants assigned to TMS perceived it to have greater influence on sense of self. Among stakeholder groups, both psychiatrists and patients interviewed tended to perceive potential changes to self as positive. In the national survey, compared to members of the public, psychiatrists, patients and caregivers, perceived a stronger influence on self. It is possible that compared to the public, these other groups see the potential benefits in treating the condition as positive changes to self, which was consistent with the interview findings. Using this information as well as the data gathered on other important ethical issues, the next step in the project will be to develop an analytic map to identify shared concerns, interrelations, and differences across interventions and stakeholder groups.

References:

None

Disclosure: Dr. Achtyes has served on advisory boards for Alkermes, Janssen, Lundbeck/Otsuka, Neurocrine Biosciences, Sunovion and Teva. Dr. Achtyes has received research support from Alkermes, Astellas, Biogen, Boehringer-Ingelheim, InnateVR, Janssen, National Network of Depression Centers, Neurocrine Biosciences, Novartis, Otsuka, Pear Therapeutics, and Takeda.

 

Abstract 19  /  Presentation

An assessment tool for the public opinion of the moral status of Artificial Intelligence

Meghan Hurley (1), Gillian Hue (1)   / Contact: [email protected]
1. Emory University

The rapidly progressing ability of Artificial Intelligence (AI) to plan actions and integrate and process information in a manner similar to humans, alongside an increasingly anthropomorphic conceptualization of AI's underlying mechanisms has led experts in the fields of neuroscience, engineering, computer science, and philosophy to question whether or not AI has the ability to become conscious or sentient. Unclear criteria for defining consciousness and sentience as well as unclear criteria for determining moral status for humans, let alone non-human beings and entities makes it even more difficult to predict how AI with human-like abilities may interact with and function alongside humanity, or process how we will decide their moral and thus legal status in society. Considering that the public's attitude and acceptance towards conscious AI will play a large role in deciding how AI are treated and whether or not they are respected as members of society, it is imperative to understand the public's current opinions and perspective of the moral status of AI. This project aims to develop a robust assessment tool that can be used to neuroethically examine factors and themes crucial to the public's opinion of the moral status of AI. The preliminary assessment tool was evaluated by conducting qualitative interviews with participants who offered insight into the clarity and effectiveness of the tool. A neuroethical analysis of the projected and emergent themes from the interviews influenced the refinement of the scenarios on the administered tool.

References:

None

Disclosure: None

 

Abstract 20  /  Presentation

Ethical considerations for navigating industry partnerships: Findings from interviews with neurotechnology researchers

Tristan McIntosh, PhD   / Contact: [email protected]
Washington University School of Medicine

Industry relationships with academic institutions and researchers have become critical for the translational advancement of numerous biomedical technologies, including neurotechnologies (e.g., devices, implants). These relationships have many scientific and practical benefits (e.g., access to resources, funding research not typically funded by federal grantors, spurring innovation). However, these relationships may also lead to bias, conflicts of interest (COIs), and other ethical concerns that have potential to undermine the integrity of the research process, training, and clinical practice pertaining to neurotechnologies. We define bias as—either consciously or unconsciously—factors other than scientific evidence that influence a study's design, conduct, or interpretation or application of results. Industry partnerships and COIs are not insidious in and of themselves (US Institute of Medicine Committee on Conflict of Interest in Medical Research Education and Practice, 2009). Yet, unconscious self-serving biases may shape researcher and physician decisions that allow secondary interests (e.g., financial or professional gain) to supersede those interests of high importance to research and clinical communities (e.g., research integrity, quality patient care), despite good intentions (Association of American Medical Colleges, 2007; Dana & Loewenstein, 2003). In light of these concerns, there have been calls for identifying and addressing these ethical issues as industry-sponsored neurotechnology research continues in order to prevent and mitigate negative effects of these biases (McIntosh & DuBois, 2020).

The purpose of this study is to identify practical and ethical concerns and benefits of industry partnerships as they relate to the conduct of neurotechnology research (e.g., selection of research questions, interpretation of results), training (e.g., of research and physician trainees), and clinical practice (e.g., treatment decisions made by physicians). We will present qualitative results and key themes from in-depth interviews of approximately 30 neurotechnology researchers: 15 with current or past industry partners and 15 without. In-depth interviews explore potential challenges and pitfalls that have potential to emerge from industry relationships, what neurotechnology researchers should do to responsibly navigate industry relationships, and what should be done to address the influence of industry on neurotechnology research, training, and clinical practice beyond the typical COI training and reporting mandated by academic institutions. Results will yield important ethical considerations for neurotechnology industry partnerships, which can be leveraged to proactively and carefully plan for ways to mitigate negative effects of biases while also reaping the benefits of academia-industry research partnerships.

There are no conflicts of interest to declare.

References:

  • Association of American Medical Colleges. (2007). The Scientific Basis of Influence and Reciprocity: A Symposium.
  • Dana, J., & Loewenstein, G. (2003). A Social Science Perspective on Gifts to Physicians from Industry. Journal of the American Medical Association, 290(2), 252-255. doi:10.1001/jama.290.2.252
  • McIntosh, T., & DuBois, J. M. (2020). From Research to Clinical Practice: Ethical Issues with Neurotechnology and Industry Relationships. AJOB Neuroscience, 11(3), 210-212. doi:10.1080/21507740.2020.1778122
  • US Institute of Medicine Committee on Conflict of Interest in Medical Research Education and Practice. (2009). Conflict of interest in medical research, education, and practice.

Disclosure: None

 

Abstract 21  /  Presentation

The risks of borrowed trust: a cautionary case study from a qualitative study exploring the use of DBS for addiction

Erika Versalovic (1), Marion Boulicault (1), Sara Goering (1), Eran Klein (1,2)   / Contact: [email protected]
1. University of Washington; 2. Oregon Health and Science University;

As neural devices progress and their applications expand, gathering end-user perspectives becomes increasingly important to better understand ethical concerns. Conducting qualitative studies through collaborations with community and clinical partners can be an effective means of gathering these critical end-user perspectives. While much discussion has focused on the need to address issues of lack of trust in the forms of both distrust and mistrust in medical research, our presentation highlights problems that can arise when participants may be overly trusting of the research team. Due to the degree of trust participants may have with clinicians and community partners, greater consideration must be given as to how to carry out studies responsibly when trust may be transferred to the collaborating research teams. This presentation explores the obstacles we encountered when conducting one such qualitative project, warns of the kinds of interview misconceptions that can arise, and posits ways these misconceptions could be mitigated in future projects.

We conducted qualitative interviews with those in treatment for substance use disorders on the prospect of deep brain stimulation as a potential treatment for addiction. Embedded ethicists carried out the interviews alongside an interdisciplinary project team that included those who worked with the participants at their treatment center. In our interviews, we found a number of participants conflated the external interviewer as part of the device development and research trial team. We also found that participants often entered the interviews with a high amount of trust in the proposed neural device due to their trust in the clinician who had recruited them for the study. A number of our participants hold identities of those that have been historically harmed by medical research and who are often excluded from research on emerging medical technologies such as DBS. As such, it is particularly important to learn how we can approach these community and clinical partnerships with as much care as possible.

The possibly distorting effects this mis-transferred trust had on the course of the interviews have implications for best practices for recruitment, how the interviews are conducted, and the writing up of results. Ultimately, we do advocate for continued expansion of qualitative work to gather user perspectives on emerging neural devices alongside clinical and community partners. How to best work with the potentially distorting and confusing effects of the patients' relationships with those partners is what we aim to better understand.

References:

None

Disclosure: None

 

Abstract 22  /  Presentation

Prospect theory and judgments about cognitive repair

Kianté A. Fernandez (1), Brain A. Erickson (1), Byron Biney (1), Joseph W. Kable (3), Roy H. Hamilton (2), John, D. Medaglia (1, 2)   / Contact: kiantef[email protected]
1. Department of Psychological and Brain Sciences, Drexel University, Philadelphia; 2. Department of Neurology, University of Pennsylvania, Philadelphia; 3. Department of Psychology, University of Pennsylvania

Background: Ethical judgments require clinicians, researchers, research participants, and patients to make choices that weigh risks and benefits. Across the public, risk and benefit sensitivity have been studied in medical decision-making for many years, including in choices involving treatment recommendation (1, 2, 3). Because decisions for or against any treatment naturally represent a choice between two prospects (to treat or not), it is possible that individuals place different weight on risks and benefits when evaluating treatments. However, little is known about how individual differences in risk and benefit sensitivity influence neuroethical choices regarding treatment recommendations involving rapidly neuromodulation technologies. Drawing from prospect theory (4), we test the tendency of individuals to weigh losses (risks) more heavily than gains (benefits) to examine the influence of risk and benefit sensitivity on the public's choices to recommend treating cognition with hypothetical neuromodulation technologies. We expected the participants would be more sensitive to risks of losses than potential gains, would nonlinearly weight probabilities when assessing treatments and be more risk-sensitive when evaluating technologies that influenced cognitive functions like mood, self-control, and long-term memory.

Methods: We administered a combination of self-report demographics surveys and a neuroethical judgment paradigms to 425 participants recruited via Amazon Mechanical Turk. Participants were asked to choose whether to recommend hypothetical neuromodulation treatments with varying degrees of associated risks and benefits in seven different cognitive domains.

Results: Overall, we found that participants were more sensitive to benefits than to risks and showed unexpected inter-domain stability across cognitive dysfunctions. Moreover, the data suggest participants made choices using nonlinear weighting of the probabilities of risks and benefits.

Conclusions: Our results suggest that risks and benefits influence whether the public might make recommendations for a neuromodulation treatment for cognition. Per prospect theory, the relatively higher weight placed on benefits might be due to reference points being set by cognitive deficits rather than a normal baseline. This study suggests that judgment tasks can be adapted to study psychological neuroethical choices. Individual variation in risk and benefit sensitivity could be further studied, and the potential influence of these variables on real-world neuroethical choices could be valuable to inform frameworks to enhance neuroethical decision-making. Further, this study establishes feasibility of using choice tasks in psychological studies of cognitive repair to guide discussions involving treatments for cognitive dysfunction. By using a behavioral task to study neuroethical judgments, our task showcases the value of quantitative research in neuroethics (5).

References:

  1. Hauber, B., Fairchild, A., & Johnson, R. (2013). Quantifying Benefit-Risk Preferences for Medical Interventions: An Overview of a Growing Empirical Literature. Applied Health Economics and Health Policy, 11(4).
  2. Rasiel, E. B., Weinfurt, K. P., & Schulman, K. A. (2005). Can Prospect Theory Explain Risk-Seeking Behavior by Terminally Ill Patients? Medical Decision Making, 25(6), 609–613.
  3. Waters, E. A., Weinstein, N. D., Colditz, G. A., & Emmons, K. M. (2007). Reducing aversion to side effects in preventive medical treatment decisions. Journal of Experimental Psychology: Applied, 13(1), 11–21.
  4. Kahneman, D., & Tversky, A. (1979). Prospect Theory: An Analysis of Decision under Risk. Econometrica, 47(2), 263–291.
  5. Reiner, P. B. (2019). Experimental Neuroethics. In Advances in Neuroethics (pp. 75–83). Springer International Publishing.

Disclosure: None

 

Abstract 23  /  Presentation  /  TOP ABSTRACT (AJOB NEUROSCIENCE)

AJOB Neuroscience cover title

Top Abstract

Child and adolescent psychiatrists' knowledge, attitudes, and experiences with polygenic risk scores

Stacey Pereira 1, Katrina Muñoz 1, Brent J. Small 2, Takahiro Soda 3, Laura Torgerson 1, Clarissa Sanchez 1, Jehannine Austin 4, Eric A. Storch 1, Gabriel Lázaro-Muñoz 1   / Contact: [email protected]
1 Baylor College of Medicine; 2 University of South Florida; 3 University of Florida; 4 University of British Columbia

Background: Progress in the identification of genomic loci associated with psychiatric disorders has increased the reliability of psychiatric polygenic risk scores (PRS). Estimates suggest that the onset of psychiatric disorders and prodromal features start by mid-20s in most cases. Thus, as risk prediction tools, psychiatric PRS may be used with children and adolescents. Given the position of child and adolescent psychiatrists (CAP) to influence the implementation of psychiatric PRS, it is critical to understand their perspectives. This study assessed US-based CAP experiences, perspectives, and potential uses of psychiatric PRS.

Methods: CAP were recruited via email in June 2020. A total of 962 CAP completed the survey, approximately 11.6% of CAP in the US.

Results: Most respondents (54%) believed psychiatric PRS are currently at least slightly useful and 87% believe they will be at least slightly useful in 5 years. However, 77% rated their knowledge of PRS as poor. Notably, 10% have already had a patient or family bring PRS to them, and 25% would request PRS if a patient/caregiver asked. Respondents endorsed a number of actions they would take in response to a child with a top 5% psychiatric PRS but no diagnosis: 48% would increase monitoring of symptoms, 42% would evaluate for symptoms, and 3.9% would prescribe medications. The vast majority was concerned that high PRS results would lead to overtreatment and negatively impact patients' emotional well-being. Finally, CAP were largely unsupportive of using PRS testing to screen for risk of psychiatric conditions in other contexts, with 90.3% of respondents indicating it was inappropriate to screen embryos for psychiatric PRS, and 95.7% indicating it was inappropriate to screen the general population for psychiatric PRS.

Conclusion: Findings suggest psychiatric PRS are already entering child and adolescent psychiatry in the US. Clinicians' self-reported poor knowledge about PRS, their willingness to generate PRS if a patient or caregiver asked, and their concerns about potential negative impacts of PRS on children and families suggest that it is critical to further examine the ethical and clinical challenges that PRS may pose and begin educational efforts to promote their informed and responsible use.

References:

None

Disclosure: None

 

Abstract 24  /  Presentation

Early indications: a neuroethical review of patent practices in neuroscience

Ari Rotenberg (1), Ashley Lawson (1), Stacey Anderson-Redick (2), Zelma Kiss (2), Judy Illes (1)   / Contact: [email protected]
1. Neuroethics Canada, Division of Neurology, Department of Medicine, University of British Columbia; 2. Hotchkiss Brain Institute, Cumming School of Medicine, University of Calgary;

Background

Patents confer unique rights to innovators over their inventions, allowing monetization of intellectual property (IP) and motivating both investment in research and dissemination of new technologies¬1. Open Science offers a potential moral framework for balancing brain-related IP with scientific progress and personal rights, as its core value of collaboration encourages scientific knowledge to be made freely accessible2. To date, however, there is limited understanding about the theoretical and practical tensions that this confluence of goals may engender3. Here we describe two arms of a study designed to elucidate current trends in brain-related IP and expert perspectives about the trade-offs between brain-related IP and Open Science.

Methods

Using an algorithmic search of the Lens.org database, we are identifying patents that cover medical techniques or methods in neuroscience or neurology as well as their targets, outcomes, or tools. Identified patents are organized by stated purpose and examined for ethical and legal viability. In a complementary interview study with research directors, patent officers, and other legal experts, we are examining perspectives and values regarding the current and anticipated brain-related IP landscapes, the societal, legal, and scientific benefits and drawbacks of brain-related IP, and the trade-offs between proprietary research and Open Science in this area. Inductive and deductive thematic coding methods are applied to analyze these data.

Results

Patents meeting inclusion criteria span claims that protect brain regions such as the cortical surface and individual lobes, underlying conditions ranging from insomnia to Alzheimer's Disease, and therapeutic interventions such as neural stimulation via one or more electrodes.

Interviews to date reveal that, while IP drives translational research by protecting the value of innovations, some applications of commercial protections subvert the common good. Participants view that unethical uses of IP obstruct research and clinical care by exploiting conflict between government obligations to judicial rights and health rights. They are cautiously optimistic about the Open Science approach as an opportunity to reconcile moral and legal obligations between inventors, funders, and the general public.

Conclusions

Cohesive guidelines are required to proactively manage unethical patent practices in brain-related IP while maintaining the commercial incentive for innovation. Such guidance will serve to promote patent practices that align with and are responsive to global commitments to collaboration and equity.

References:

  1. Moehrle, M. G., & Frischkorn, J. (2021). Bridge strongly or focus - An analysis of bridging patents in four application fields of carbon fiber reinforcements. Journal of Informetrics, 15(2), 101138. https://doi.org/10.1016/j.joi.2021.101138
  2. Poupon, V., Seyller, A., & Rouleau, G. A. (2017). The Tanenbaum Open Science Institute: Leading a Paradigm Shift at the Montreal Neurological Institute. Neuron, 95(5), 1002–1006. https://doi.org/10.1016/j.neuron.2017.07.026
  3. Roskams-Edris, D., Anderson-Redick, S., Illes, J., & Kiss, Z. H. T. (2019). Medical Methods Patents in Neuromodulation. In Neuromodulation (Vol. 22, Issue 4, pp. 398–402). Blackwell Publishing Inc. https://doi.org/10.1111/ner.12919

Disclosure: None

 

Abstract 25  /  Presentation

Perceived ethical concerns to using psychiatric electroceutical interventions revealed in a national survey of psychiatrists, patients, caregivers, and the general public

Laura Y. Cabrera [1,2,3], Maryssa M.C. Gilbert [4], Robyn Bluhm [5,6], Eric Achtyes [7,8], Aaron M. McCright [9]   / Contact: [email protected]
1. Center for Neural Engineering, Penn State University; 2. Department of Engineering Science and Mechanics, Penn State University; 3. Rock Ethics Institute, Penn State University; 4. College of Human Medicine, Michigan State University; 5. Department of Philosophy, Michigan State University; Lyman Briggs College, Michigan State University; 7. Division of Psychiatry & Behavioral Medicine, College of Human Medicine, Michigan State University. 8. Pine Rest Christian Mental Health Services; 9. Department of Sociology, Michigan State University.

The neuroethics literature identifies several important ethical issues with psychiatric electroceutical interventions (PEIs)—treatments that utilize electrical or magnetic stimuli to treat psychiatric conditions. Better understanding how different stakeholder groups view these ethical concerns is important, as these perceptions can impact acceptance of PEIs and should be taken into consideration and addressed when translating these novel interventions into practice. To facilitate such improved understanding, we examined views about PEIs among psychiatrists, patients with depression, caregivers, and members of the general public in two steps. First, we conducted 48 semi-structured qualitative interviews. Second, we administered a survey with an embedded experiment to four nationwide samples of psychiatrists (n=505), people diagnosed with depression (n=1050), caregivers of people with depression (n=1026), and members of the general public with no major psychiatric condition (n=1022). We randomly assigned respondents to one of eight conditions in our full factorial experiment: four PEI modalities [electroconvulsive therapy (ECT), transcranial magnetic stimulation (TMS), deep brain stimulation (DBS, or adaptive brain implants (ABIs)] X two depression severity levels [moderate or severe]. We analyzed the interview data with qualitative content analysis methods and a deliberative approach and the survey data with ANOVA and logistic regression. In our interviews, worries about informed consent were the most frequently mentioned ethical concern for patients and the public, and psychiatrists' second most frequently mentioned ethical concern. These worries were focused on receiving adequate, appropriate, and understandable information during the consent process. In our national survey, non-clinicians' most frequently reported "limited evidence of the treatment's safety" as their most important ethical concern to the use of PEIs, this was also the top ethical concern across different modalities. Psychiatrists most frequently reported the "patient not getting treatment when it would actually help them" as their top ethical concern. Compared to our interview data, worries about informed consent were much less prominent among all stakeholders in our national survey data. Psychiatrist survey respondents' top ethical concern is also an important social justice issue, namely ensuring that patients get access to these interventions in a timely manner. Overall, our interview and survey data confirm that perceived ethical concerns about the use of PEIs vary between clinicians and non-clinicians and across PEI modalities. Clinicians and scientists should consider these ethical considerations of stakeholders when recommending and developing these PEIs, respectively.

References:

  1. Rossi S, Hallett M, Rossini PM, Pascual-Leone A. Safety, ethical considerations, and application guidelines for the use of transcranial magnetic stimulation in clinical practice and research. Clinical Neurophysiology. 2009;120: 2008–2039. http://doi:10.1016/j.clinph.2009.08.016.
  2. Blease CR. Electroconvulsive therapy, the placebo effect and informed consent. J Med Ethics. 2013;39: 166–170. http://doi:10.1136/medethics-2012-100955.
  3. Bell E, Racine E, Chiasson P, Dufourcq-Brana M, Dunn L B, Fins J J, et al. Beyond consent in research. Cambridge Quarterly of Healthcare Ethics. 2014; 23(3), 361–368. http://doi.org/10.1017/S0963180113000984.
  4. Fins J J. Deep Brain stimulation: Ethical issues in clinical practice and neurosurgical research. In Krames E, Peckham PH, Rezai A. Neuromodulation. 2009; 1: 81–91. Elsevier. http://doi.org/10.1016/B978-0-12-374248-3.00010-0.

Disclosure: Dr. Eric Achtyes has served on advisory boards for Alkermes, Janssen, Lundbeck/Otsuka, Neurocrine Biosciences, Sunovion and Teva. Dr. Achtyes has received research support from Alkermes, Astellas, Biogen, Boehringer-Ingelheim, InnateVR, Janssen, National Network of Depression Centers, Neurocrine Biosciences, Novartis, Otsuka, Pear Therapeutics, and Takeda.

 

Abstract 26  /  Presentation

A scoping review of ethical, legal and social issues in behavioral variant frontotemporal dementia

Brian Lee (1), Anirudh Nair (2), and Veljko Dubljevic (3)   / Contact: [email protected], [email protected], [email protected]
1. Claremont McKenna College; 2. Mount Sinai School of Medicine; 3. North Carolina State University;

Behavioral variant frontotemporal dementia (bvFTD) is a subtype of frontotemporal dementia characterized by changes in personality, social behavior, and cognition [1]. Patients with bvFTD often behave in ways considered inappropriate or illegal, engaging in impulsive behavior or committing crimes as is seen in 37-56% of reported cases [2]. Despite the fact that they may lack the neural circuitry to inhibit wrong actions, patients with bvFTD are generally considered fully autonomous individuals [3]. This confusion about autonomy may stem from the seemingly paradoxical ability of bvFTD patients to know the difference from right and wrong yet not be able to act in accordance with their understanding [4]. To investigate the social, ethical, and legal issues associated with bvFTD, we conducted a scoping review of academic literature found in Web of Science, PubMed, and PhilPapers databases. Precise search terms, modified inclusion and exclusion criteria, and modified codes from Nair & Dubljević [5] were used to screen an initial pool of 640 articles down to a sample of 56. Articles that did not directly focus on bvFTD or discuss social, ethical, or legal issues were excluded. A pilot sample of 12 articles was then coded to verify the relevance of the overall sample and identify themes not covered by existing codes. Our study revealed that there are precedents for acknowledging the impact bvFTD has on an affected patient's fitness to stand for trial. In addition to four articles that mentioned offenders with bvFTD as unfit to stand trial by insanity, 16 articles mention the use of dementia evidence (ranging from neuroimaging to psychiatric evaluation) invoked in the court of law to give a better understanding of the autonomy or absence of autonomy in bvFTD patients. Additionally, our study discovered a number of unique yet pressing (emergent) themes in the literature that merit further research and consideration. These include the need for officer training in responding to events caused by elders affected by bvFTD and the need to educate healthcare providers on how best to navigate discussions regarding bvFTD with caregivers. Overall, the academic literature suggests that a multitude of social, ethical, and legal concerns have persisted and are emerging that prevent traditional applications of medico-legal categories such as autonomy, capacity and competence. Notably, the problem of socio-moral irregularities in bvFTD has implications for the future of cognitive capacity assessments in clinical and legal settings, and deserves sustained attention by neuroethicists.

References:

  1. Chare, L., J.R. Hodges, C.E. Leyton, et al. 2014. New criteria for frontotemporal dementia syndromes: Clinical and pathological diagnostic implications. Journal of Neurology, Neurosurgery, and Psychiatry 85(8):866-871.
  2. Diehl-Schmid, J.K., R. Perneczky, J. Koch, N. Nedopil, and A. Kurz. 2013. Guilty by suspicion? Criminal behavior in frontotemporal lobar degeneration. Cognitive and Behavioral Neurology. 26(2):73-77. doi: 10.1097/WNN.0b013e31829cff11.
  3. Dubljević, V. 2020. The Principle of Autonomy and Behavioral Variant Frontotemporal Dementia, Journal of Bioethical Inquiry, 17(2): 271-282.
  4. Dubljević, V. & Neupert, S. 2021. The Complex Nature of Willpower and Conceptual Mapping of its Normative Significance in Research on Stress, Addiction and Dementia, Behavioral and Brain Sciences, https://doi.org/10.1017/S0140525X20000886.
  5. Nair, A. & Dubljević, V. (2021): Public Representation of Social and Ethical Issues in Frontotemporal Dementia, in Dubljević, V. and Bottenberg, F. (Eds.): Living with Dementia: Neuroethical Issues and International Perspectives, Cham: Springer/Nature, pp. 109-129.

Disclosure: None

 

Abstract 27  /  Presentation  /  TOP ABSTRACT (AJOB NEUROSCIENCE)

AJOB Neuroscience cover title

Top Abstract

“It's better to stay away from tablets, even if they are vitamin tablets”: parental perceptions of nutritional supplements for cognitive enhancement in India

1. Jayashree Dasgupta & 2. Georgia Lockwood Estrin; 3. Zenia Yadav; 4. Ilina Singh   / Contact: [email protected]; [email protected]
1. Sangath, New Delhi, India; 2. Birkbeck, University of London, Malet Street, Bloomsbury, London WC1E 7HX, UK; 3. Sangath, New Delhi, India; 4. The Oxford Uehiro Centre for Practical Ethics, University of Oxford, UK

Background: The achievement of optimal early cognitive development is crucial, as it is related to health, education, and well-being (UNICEF, 2013; 2019). A large body of literature has examined the connection between nutritional supplementation and cognitive development in disadvantaged children (Nyaradi et al., 2013); and meta-analyses with studies taking place in low and middle income countries (LMICs) find that childhood nutritional supplementation benefits cognitive development (Ip et al., 2016). It has also been considered important for reducing stunting and anaemia, which are associated with cognitive impairment and poor school performance (UNICEF, 2013; 2019). They have therefore been incorporated into public health policy due to ease of scalability. However, little is known about how parents in LMIC settings view use of nutritional supplements as a cognitive enhancement approach to help children attain their full cognitive developmental potential.

Objectives: This study aims to explore parental perceptions on the use of nutritional supplements and vitamins to enhance children's cognitive potential in an LMIC context.

Methods: In depth interviews (N=11) and focus group discussions (N=2) were conducted with parents of primary school-going children in Delhi, India. Parents were recruited from high and low socioeconomic status (SES) to reflect views of parents with varying access to resources. Transcripts were analyzed using exploratory thematic analysis.

Results: We present preliminary findings. Analysis revealed that nutritious food and healthy eating were considered most beneficial for enhancing children's cognitive development. Parents viewed nutritional supplements and vitamin pills differently to healthy eating, with them being viewed similarly to nootropic drugs, with concerns being raised about their effectiveness for cognitive enhancement. Interestingly, how nutritional supplements were endorsed was also an important theme, with greater trust in vitamin pills if prescribed by a doctor. Particular brands of nutritional supplements were endorsed highlighting the role that marketing and advertising play in influencing parental perceptions. Affordability was a limiting factor for parental acceptability towards nutritional supplements and vitamin pills, especially those from low SES.

Conclusion: Although nutritional supplementation is already part of policy, it is interesting that parents viewed them with similar concern and skepticism as nootropic drugs for cognitive enhancement. This study therefore emphasizes concerns about a universal approach to nutritional supplementation. We also highlight the importance of how these supplements are endorsed, which is important to keep in mind for building parental trust and improving the uptake of nutritional supplementation with children.

References:

  • United Nations Children’s Fund. Improving child nutrition: The achievable imperative for global progress. (Division of Communication, UNICEF, 2013).
  • Essential nutrition actions: mainstreaming nutrition through the life-course. Geneva: World Health Organization; 2019. Licence: CC BY-NC-SA 3.0 IGO.
  • Nyaradi, A., Li, J., Hickling, S., Foster, J. and Oddy, W.H., 2013. The role of nutrition in children's neurocognitive development, from pregnancy through childhood. Frontiers in human neuroscience, 7, p.97
  • Ip, P., Ho, F.K.W., Rao, N., Sun, J., Young, M.E., Chow, C.B., Tso, W. and Hon, K.L., 2017. Impact of nutritional supplements on cognitive development of children in developing countries: A meta-analysis. Scientific reports, 7(1), pp.1-9.

Disclosure: None

 

Abstract 28  /  Presentation

Physicians' experiences in DBS for refractory epilepsy: a survey study

Karmele R. Olaciregui Dague, MD1, Rainer Surges, MD1.   / Contact: [email protected]
1: Epileptology Department, University Hospital Bonn (Germany)

Background: The available body of evidence on the antiepileptic effects of deep brain stimulation (DBS) is limited, especially when compared to the volume of evidence supporting DBS in the treatment of movement disorders. Consequently, the safety and side effects of DBS for refractory epilepsy are also not sufficiently understood. Evidence suggests stimulation of the anterior nucleus of the thalamus (ANT), hippocampus (HC), or centromedian nucleus of the thalamus (CMT) significantly reduces the frequency of seizures, with combined responder rates (>50% seizure reduction) of >70% (1,2). Nevertheless, several patient interview studies in the early 2000s reported changes in personality, identity, agency, authenticity, autonomy and self (PIAAAS) and self-estrangement following DBS implantation for Parkinson's disease (3,4). This has led to a lively debate on the neuroethical implications of this treatment (5) and a concern for side effects and informed consent that has not translated into other areas of application of DBS, such as epilepsy.

Methods and aims: We conducted an online survey study of epilepsy centers offering DBS for refractory epilepsy, sourced from the Medtronic Outcomes in Refractory Epilepsy registry (MORE).

Results: Five centers responded to the survey request. All 5 reported responder rates of ≥50%. Three centers reported psychiatric side effects. Cognitive side effects were reported by 2 centers. There were no reported cases of personality changes. There were no SOPs in place to detect psychiatric, personality or cognitive side effects in any of the surveyed centers. Informed consent practices varied among centers: 4 claimed adequate informed consent was possible in all patients, though approximately half of centers considered changes in PIAAAS and psychiatric side effects are not adequately addressed during informed consent at their institution. Physician's concerns centered around the need for further research into possible side effects.

Conclusions: Evidence suggests DBS for refractory epilepsy is a safe and effective treatment in selected patients. Nevertheless, physicians report psychiatric and cognitive side effects and varied clinical and informed consent procedures. We identified three areas of optimization in the application of DBS in refractory epilepsy: research focus, informed consent practices and SOPs both in the experimental and clinical settings.

References:

  1. Li, MCH, Cook, MJ. (2018). Deep brain stimulation for drug‐resistant epilepsy. Epilepsia, 59: 273– 290.
  2. Chang, B., Xu, J. (2018). Deep brain stimulation for refractory temporal lobe epilepsy: a systematic review and meta-analysis with an emphasis on alleviation of seizure frequency outcome. Childs Nerv Syst 34:321–327. DOI 10.1007/s00381-017-3596-6
  3. Agid, Y, Schüpbach, M, Gargiulo, M, Mallet, L, Houeto, J L, Behar, C, et al. (2006). Neurosurgery in Parkinson’s disease: The doctor is happy, the patient less so? Journal of Neural Transmission. Supplementum, 70, 409–414
  4. Schüpbach, M., Gargiulo, M., Welter, M. L., Mallet, L., Béhar, C., Houeto, J. L., et al. (2006). Neurosurgery in Parkinson disease: A distressed mind in a repaired body? Neurology, 66(12), 1811–1816.
  5. ilbert, F., Viaña, J. N. M., & Ineichen, C. (2018). Deflating the ‘DBS causes personality changes’ bubble. Neuroethics. https ://doi.org/10.1007/s1215 2-018-9373-8.

Disclosure: KO has received speaker fees from Eisai GmbH

 

Abstract 29  /  Presentation  /  TOP ABSTRACT (AJOB NEUROSCIENCE)

AJOB Neuroscience cover title

Top Abstract

The “Unusable” Data Crisis: The Origins of Racial Bias in Electrophysiology and A Roadmap for Inclusion

Kate Webb 1, John Etter 2, Jasmine Kwasa 3.   / Contact: [email protected]
1. University of Wisconsin-Milwaukee, Department of Psychology. 2. McGill University, Department of Philosophy, 3. Carnegie Mellon University, Department of Electrical and Computer Engineering.

Recently, prominent scholars, popular media, and scientific articles have called out the detrimental impact of social biases in scientific research, from non-inclusive neurotechnological methods to non-representative study samples and statistical approaches (e.g., machine learning). In cognitive neuroscience in particular, tools used for physiological data collection are largely viewed as objective and as such, the ethical implications of potentially embedded biases therein remain largely unaddressed. While neuroscience tools like EEG and functional near-infrared spectroscopy have excluded individuals from studies based on hair type and skin tone, respectively. We argue that one methodology, electrodermal activity recordings, (e.g., skin conductance responses; SCR), are influenced not only by exclusionary biases from inherent phenotypic differences, but also from non-inherent psychophysiological differences due to the lived experiences of the individuals tested. Specifically, negative mental health symptoms that are consequences of racism may be confounds that introduce bias in SCR, leading to an abundance of "unusable data" (i.e., discarded by the researcher) from minoritized individuals. We situate these issues within structural injustices and urge researchers to challenge inequities and racism in science and in our larger society. Scientists must consider whether research methods may be leading to biased study conclusions regardless of their intent. In addition, we propose changes to how the gatekeepers of scientific research (e.g., institutions, journals, and foundations) operate. Finally, we echo previous calls for anti-racism and anti-discrimination actions in psychological research as well as propose additional procedures which may lead to more equitable science.

References:

None

Disclosure: None

 

Abstract 30  /  Presentation  /  TOP ABSTRACT (AJOB NEUROSCIENCE)

AJOB Neuroscience cover title

Top Abstract

Clinical and psychosocial factors considered when deciding whether to offer deep brain stimulation for childhood dystonia

Laura Torgerson [1], Katrina A. Muñoz [1], Kristin Kostick [1], Peter Zuk [1], Jennifer Blumenthal-Barby [1], Eric A. Storch [1, 2], Gabriel Lázaro-Muñoz [1]   / Contact: [email protected]
1. Center for Medical Ethics and Health Policy, Baylor College of Medicine; 2. Department of Psychiatry and Behavioral Sciences, Baylor College of Medicine

Introduction: Childhood dystonia is often non-responsive to medications, and refractory cases are increasingly being treated with deep brain stimulation (DBS). However, there is limited consensus about when DBS should be offered and little examination of clinicians' decision-making process when determining whether to offer DBS for childhood dystonia.

Objective: The aim of this study was to identify and examine key clinical and psychosocial factors considered by pediatric movement disorder specialists when deciding when to offer DBS.

Methods and Materials: Semi-structured interviews (n=29) with pediatric dystonia clinicians were conducted, transcribed, and coded. Using thematic content analysis, nine central themes were identified when clinicians were asked about key factors, clinical factors, and psychosocial factors considered prior to offering pediatric DBS.

Results: Clinicians identified nine main factors. Five of these were classified primarily as clinical factors: early intervention and younger age (raised by 86% of respondents), disease and symptom severity (83%), etiology and genetic status (79%), clinicians' perceived risks and benefits of DBS for the patient (79%) and exhaustion of other treatment options 55%). The remaining four were classified primarily as psychosocial factors: social and family support (raised by 97% of respondents), patient and caregiver expectations about outcomes and understanding of DBS treatment (90%), impact of dystonia on quality of life (69%), and financial resources and access to care (31%).

Conclusion: The consideration of psychosocial factors such as family support and the family's financial resources were notable findings given that judgments about these factors are susceptible to bias and could potentially limit access to DBS for some children. This study provides greater insights into which factors are considered by clinicians to contribute to more positive outcomes for patients considering DBS treatment for childhood dystonia.

References:

  • Cif L, Coubes P. Historical developments in children’s deep brain stimulation. European Journal of Paediatric Neurology. 2017;21(1):109-117. doi:10.1016/j.ejpn.2016.08.010.
  • Bronte‐Stewart H, Taira T, Valldeoriola F, et al. Inclusion and exclusion criteria for DBS in dystonia. Movement Disorders. 2011;26(S1):S5-S16. doi:10.1002/mds.23482.
  • Hale AT, Monsour MA, Rolston JD, Naftel RP, Englot DJ. Deep brain stimulation in pediatric dystonia: a systematic review. Neurosurg Rev. 2020;43(3):873-880. doi:10.1007/s10143-018-1047-9.
  • Elkaim LM, Alotaibi NM, Sigal A, et al. Deep brain stimulation for pediatric dystonia: a meta-analysis with individual participant data. Dev Med Child Neurol. 2019;61(1):49-56. doi:10.1111/dmcn.14063.
  • Vidailhet M, Jutras M-F, Grabli D, Roze E. Deep brain stimulation for dystonia. Journal of Neurology, Neurosurgery & Psychiatry. 2013;84(9):1029-1042. doi:10.1136/jnnp-2011-301714.

Disclosure: None

 

Abstract 31  /  Presentation

BCI's Impact on User Agency: Mapping the Terrain

Andreas Schönau (1,2), Ishan Dasgupta (1,2), Tim Brown (1,2), Erika Versalovic (1,2), Sara Goering (1,2), Eran Klein (1-3)   / Contact: [email protected]
1. Department of Philosophy, University of Washington; 2. Center for Neurotechnology, University of Washington; 3. Oregon Health and Science University, Portland;

Neural devices, such as brain computer interfaces (BCIs), have the capacity to enable end users to regain abilities they lost due to a disease or an accident. While end-users recognize and appreciate the technologies' capacity to maintain or restore their capabilities, the neuroethics literature is replete with examples of concerns about their impacts on agency in the form of: perceived lack of control (Kellmeyer et al. 2016), inability to maintain privacy (Klein/Rubel 2018), changes in personal identity (Schüpbach et al. 2006) and difficulties trusting an implanted device (Collins et al. 2017). Inquiries into the nature of these concerns and how to mitigate them has produced scholarship that often emphasizes one of those issues – responsibility, privacy, authenticity, or trust – in isolation. However, we believe that examining these ethical dimensions separately fails to capture a key part of the experience of living with a neural device. On these grounds, we have developed an "Agency Map" which brings together the diverse and interrelated dimensions of agency that are illuminated through BCI use into a comprehensive framework (Schönau et al. 2021).

To supplement and inform our conceptual model of agency, we conducted semi-structured qualitative interviews with six end-users participating in BCI research. Five of the participants utilized a BCI-driven robotic arm they could control with their thoughts—one of whom received sensory stimulation as feedback. Our last participant is living with a closed-loop deep brain stimulator to treat obsessive compulsive disorder. Our goal was to conduct an in-depth exploration of participant views on the effects of neural devices on their sense of agency. The perspectives gathered from these interviews help us validate the conceptual insights of our framework. Preliminary analysis of this empirical data suggests that the ethical dimensions of agency described in our framework are reflected in end-user's experiences. We plan to continue interviewing end-users to better understand how BCIs impact their agency. These data, along with our conceptual map, will inform the development of an informed consent tool designed to help future users through the decision making process of getting a neural device.

References:

  • Collins, Kelly L./Guterstam, Arvid/Cronin, Jeneva/Olson, Jared D./Ehrsson, H. Henrik/Ojemann, Jeffrey G. (2017): Ownership of an artificial limb induced by electrical brain stimulation. In: Proceedings of the National Academy of Sciences 114, 166–171.
  • Kellmeyer, Philipp/Cochrane, Thomas/Müller, Oliver/Mitchell, Christine/Ball, Tonio/Fins, Joseph J./Biller-Andorno, Nikola (2016): The Effects of Closed-Loop Medical Devices on the Autonomy and Accountability of Persons and Systems. In: Cambridge Quarterly of Healthcare Ethics 25, 623–633.
  • Klein, Eran/Rubel, Alan (2018): Privacy and Ethics in Brain–Computer Interface Research. Routledge. 653–668.
  • Schönau, Andreas/Dasgupta, Ishan/Brown, Timothy/Versalovic, Erika/Klein, Eran/Goering, Sara (2021): Mapping the Dimensions of Agency. In: AJOB Neuroscience, 1–15.
  • Schüpbach, M./Gargiulo, M./Welter, M. L./Mallet, L./Behar, C./Houeto, J. L./Maltete, D./Mesnage, V./ Agid, Y. (2006): Neurosurgery in Parkinson disease A distressed mind in a repaired body? In: Neurology 66, 1811–1816.

Disclosure: None

 

Abstract 32  /  Presentation  /  TOP ABSTRACT (AJOB NEUROSCIENCE)

AJOB Neuroscience cover title

Top Abstract

Indigenous knowledges in brain and mental health: A scoping review

1. Louise Harding, 2. Caterina Marra, 3. Vyshu Manohara, 4. Judy Illes   / Contact: [email protected]
1-4. University of British Columbia.

Introduction

Indigenous peoples' right to brain health has been challenged by the violation of their rights to practice their cultures, speak their languages, and engage in traditional medical practices. Despite this ongoing systemic oppression, Indigenous knowledges and healing practices endure today and contribute to the well-being of communities, to global understandings of the brain and mind, and approaches to mental health. Here, we share the results of a scoping review of the academic literature worldwide – both research and reviews - that has examined global Indigenous peoples' perspectives relevant to neuroethics.

Methods and Results

We searched three academic databases using phrases and terms pertaining to brain, neuro, mind, and Indigenous populations. Of 63 analyzed to date, 43 of the articles are research and 20 are reviews or commentaries. The earliest date of publication was 1963; 65% were published between 2006-2020. One hundred and twenty-six (126) Indigenous communities were identified across 33 countries and 5 continents. By contrast to the considerable diversity of Indigenous groups discussed in the articles, the countries of origin of the corresponding authors were far narrower: 80% were affiliated with institutions in the USA, Canada, Australia, or New Zealand. The majority of the articles discussed Indigenous peoples' perspectives or lived experiences with one or more conditions of brain or mental wellness. These included DSM-V disorders (e.g., schizophrenia, fetal alcohol spectrum disorder), neurological conditions (e.g., dementia, traumatic brain injury), spiritual afflictions (e.g., spiritual or demonic possession), and Indigenous conceptualizations of mental wellness. Ethics topics were embedded throughout most articles, though rarely addressed directly. They spanned topics including culturally safe and appropriate care, pan-Indigenization, medicalization and geneticization, and caregiver decision-making.

Discussion

This work supports the meaningful incorporation of Indigenous knowledges into neuroscience initiatives such as the International Brain Initiative, the Canadian Brain Research Initiative, and BRAIN 2.0. Ultimately, engagement with issues relevant to the Indigenous communities whose land we occupy will contribute to the emergence of a truly global, collaborative neuroethics.

References:

None

Disclosure: None

 

Abstract 33  /  Presentation

Ethical Implications of Brain-Computer Interfaces: A Comparison of Public, Patient, & Provider Perceptions

Maya Roytman (1), Nathan A. Shlobin BA (2), Joshua M. Rosenow MD (2), Joseph Vukov PhD (1)   / Contact: [email protected]
1. Loyola University Chicago, Chicago, IL, USA, 2. Department of Neurological Surgery, Northwestern University Feinberg School of Medicine, Chicago, IL, USA

Brain-Computer Interfaces (BCIs) are computer-based systems that enable communication between the brain and a device. BCIs hold promise for improving the lives of people with neurotrauma and cognitive and movement disorders, either directly or in conjunction with assistive and rehabilitation technologies [1]. As knowledge regarding computational modeling of brain function advances, BCIs will continue to become more prevalent in clinical therapeutics.

Given BCI technology is an "iterative, goal-directed intervention in the nervous system," BCIs raise ethical concerns regarding who (i.e. clinicians, patients, etc.) controls the device [2]. While individual perceptions on BCIs and technical expectations have been explored, limited data comparing perspectives regarding ethical implications among clinicians, patients, and the public exists [3-5]. Since a concordance or discordance of attitudes about BCI use affects trust and transparency within the patient-physician relationship, the lack of exploration in this area poses challenges for physicians and patients alike.

In this study, we will be investigating the similarities and differences in ethical perceptions of BCI usage between three groups of stakeholders: providers who implant and adjust BCI devices, patients who use BCIs to improve their physical and cognitive functioning, and the general public who may have a different understanding of BCI technology. We will present clinical vignettes of BCI use. Survey participants will evaluate various ethical considerations in the presented scenarios using Likert scales. Based upon their responses, we can observe group perceptions regarding domains of autonomy, informed consent, and privacy and compare whether there is overlap in perceptions between the three groups. The results of this study would provide key insights for clinical use and education regarding BCIs. If ethical perceptions of BCIs converge among providers, patients, and the general public, then consensus on the implications of BCI usage will be validated. Conversely, if ethical perceptions of BCIs diverge, then physicians must re-evaluate current BCI education practices to establish a united understanding of BCIs moving forward. With this project, we can provide greater clarity on current BCI perspectives and move towards reconciling the stances of BCI stakeholders to improve patient care.

References:

  1. Shih, J. J., Krusienski, D. J., & Wolpaw, J. R. (2012, March). Brain-computer interfaces in medicine. In Mayo Clinic Proceedings (Vol. 87, No. 3, pp. 268-279). Elsevier.
  2. Klein, E. (2017). Neuromodulation ethics: preparing for brain-computer interface medicine. Neuroethics: Anticipating the future, 123-143.
  3. Nijboer, F., Clausen, J., Allison, B. Z., & Haselager, P. (2013). The asilomar survey: Stakeholders’ opinions on ethical issues related to brain-computer interfacing. Neuroethics, 6(3), 541-578.
  4. Sample, M., Sattler, S., Blain-Moraes, S., Rodríguez-Arias, D., & Racine, E. (2020). Do Publics Share Experts’ Concerns about Brain–Computer Interfaces? A Trinational Survey on the Ethics of Neural Technology. Science, Technology, & Human Values, 45(6), 1242-1270.
  5. Vansteensel, M. J., Kristo, G., Aarnoutse, E. J., & Ramsey, N. F. (2017). The brain-computer interface researcher’s questionnaire: from research to application. Brain-Computer Interfaces, 4(4), 236-247.

Disclosure: Dr. Rosenow is a consultant for Boston Scientific Corporation, outside of the submitted work. Ms. Roytman, Mr. Shlobin, and Dr. Vukov have no conflicts of interest to disclose.

 

Abstract 34  /  Presentation

COVID-19, lockdown and the role of environment in drug preference: Implications for addiction neuroscience.

Nicholas Sinclair-House [1, 2, 3] and Sarah Osborn [1]   / Contact: [email protected]
1. University of Sussex, 2. Sussex Addiction Research and Intervention Centre (SARIC), 3. Sussex Crime Research Centre (CRC)

Animal studies have demonstrated an environmentally-cued double dissociation of stimulant and sedative drugs: sedatives are preferred in a home environment and stimulants outside the home. The suggestion of similar environmental influence on drug preference in humans has led some theorists to question our current unitary models of drug addiction. The ethical and methodological challenges to examining this experimentally were negated by lockdown measures introduced in response to the COVID-19 pandemic; drug users, with the majority of others, were obliged to stay at home. As we reported in 2020, the use of stimulant drugs fell significantly during lockdown, while the same period saw a marked increase in the use of sedative drugs. These changes accorded with our prediction of environmental factors driving drug preference. Here, in addition to confirming and supplementing those early findings, we expand the scope of our investigation to include the post-lockdown period, examining whether patterns of drug use which changed during lockdown would be maintained, or reverse as restrictions eased. We show that this period saw stimulant use return to (or exceed) pre-pandemic levels. However, the same was not true of sedative drugs. The use of pharmaceutical opioids, benzodiazepines and alcohol all increased during lockdown, and subsequently remained elevated as controls were lifted. Wastewater analysis, overdose rates, global surveys and emerging clinical findings demonstrate that lockdown measures accelerated the already upward trend in sedative drug use. Clinical studies show some users substituting sedative drugs for their conventionally preferred drug during lockdown, then maintaining that use alongside resumed use of their previous drug of choice following the lifting of restrictions. Qualitative investigation found boredom and anxiety prominent in motivational narratives around increased drug use during lockdown, further highlighting the relevance of cognition and emotion in drug preference. Both between and within drug classes, we were able to discern complex yet distinct patterns which illustrate the critical role played by factors largely outside the attention of current neurobiological models of drug reward and addiction. The consistency of these findings across all levels of our investigation suggests an important area of focus for directing social policy, developing harm reduction measures and advancing effective treatment approaches. Moreover, it underscores that our current unitary models of addiction fall short of explaining the powerful influence of environment on modifying or maintaining drug choice, and emphasizes the urgent need to address this shortcoming.

References:

  • Badiani, A., Caprioli, D. & De Pirro, S. (2019). Opposite environmental gating of the experienced utility (‘liking’) and decision utility (‘wanting’) of heroin versus cocaine in animals and humans: Implications for computational neuroscience. Psychopharmacology, 236, 2451–2471.
  • De Pirro, S., Galati, G., Pizzamiglio, L. & Badiani, A. (2018). The affective and neural correlates of heroin versus cocaine use in addiction are influenced by environmental setting but in opposite directions. Journal of Neuroscience, 38(22), 5182-5195.
  • European Monitoring Centre for Drugs and Drug Addiction (2020). Impact of COVID-19 on patterns of drug use and drug-related harms in Europe. EMCDDA Trendspotter briefing, Lisbon.
  • Sinclair-House, N. & Osborn, S. (2020, October 22-23). An isolated experiment: What the COVID-19 pandemic can tell us about addiction. [Poster/video presentation]. International Neuroethics Society Annual Meeting, Online.
  • Winstock, A. R., Davies, E. L., Gilchrist, G., Zhuparris, A., Ferris, J. A., Maier, L. J. & Barratt, M. J. (2020). Global Drug Survey COVID-19 Special Edition Key Findings Report.

Disclosure: None

 

Abstract 35  /  Presentation

The neuroethics of cortical visual prosthetics research

Peter Zuk   / Contact: [email protected]
Center for Medical Ethics and Health Policy, Baylor College of Medicine

Cortical visual prosthetics (CVPs) aim to restore sight or a functional analogue for people who are blind. A great deal of early work on CVPs was performed by William Dobelle. However, Dobelle's work raises serious ethical and policy issues. In order to skirt FDA regulations, Dobelle arranged for most participants to undergo surgery in Portugal, and one participant reportedly suffered a seizure after being allowed to control the stimulation of their own brain [1]. Interviews with 13 of Dobelle's former research participants have identified issues related to informed consent, therapeutic misconception, unmet expectations, financial burdens, and post-trial access [2].

Several next-generation CVP systems are now being developed and tested in part due to the foundation laid by Dobelle's work. However, devices developed without significant end-user input are often rejected or abandoned by those end-users [3,4]. It is therefore important to examine CVP end-user perspectives on key topics such as the status of blindness as a disability and its role in identity, autonomy, and quality of life. These domains depend crucially on an individual's lived experience and self-understanding, making CVP research participants well-positioned to inform neuroethics analysis of these and other important domains of potential non-clinical benefit and risk. Furthermore, heterogeneity in expectations of former research participants suggests differences in definitions of restoration of function, preferences about what constitutes an acceptable level of function, or both (as I predict). It is therefore also important to investigate participants' perspectives on these issues and how they align with researchers' definitions and goals. I predict substantial but incomplete overlap.

Through a BRAIN Initiative-funded grant, I plan to conduct qualitative research investigating these issues. As an ethicist embedded in a CVP clinical trial, I will identify ethics and policy questions that arise in the research process and determine how researchers conceptualize restoration of function and its ethical significance. Informed by this initial work, I will then conduct semi-structured interviews with both researchers and research participants. Interviews will focus on the values that guide and ought to guide this research now and in the future. Specific topics will include potential impacts on identity, autonomy, and quality of life, as well as issues of access, avoidance of group harms to the blind community, commercialization, dual use, and the definition research success. This will help ensure that the perspectives of key stakeholders figure importantly in ethical and policy considerations of CVP research as the technology matures.

References:

  1. Kotler S. Vision Quest. Wired Magazine. September 1, 2002. https://www.wired.com/2002/09/vision/.
  2. Lane FJ, Nitsch KB, Troyk P. Participant perspectives from a cortical vision implant study: Ethical and psychological implications. 7th International IEEE/EMBS Conference on Neural Engineering. 2015;264-267. doi:10.1109/NER.2015.7146610.
  3. Scherer MJ. What we know about women’s technology use, avoidance, and abandonment. Women & Therapy 1994;14(3-4):117-132. doi: 10.1300/J015v14n03_12.
  4. Phillips B, Zhao H. Predictors of assistive technology abandonment. Assist Technol. 1993;5(1):36-45. doi:10.1080/10400435.1993.10132205.

Disclosure: None

 

Abstract 36  /  Presentation  /  TOP ABSTRACT (AJOB NEUROSCIENCE)

AJOB Neuroscience cover title

Top Abstract

Participant perspectives on personality, identity, mood, and behavioral changes in experimental deep brain stimulation

Peter Zuk[1], Clarissa E. Sanchez[1], Kristin Kostick-Quenet[1], Katrina A. Muñoz[1], Lavina Kalwani[1], Richa Lavingia[2], Laura Torgerson[1], Demetrio Sierra-Mercado[3,1], Jill O. Robinson[1], Stacey Pereira[1], Simon Outram[4], Barbara A. Koenig[4], Phil A. Starr[5], Aysegul Gunduz[6,7], Kelly Foote[6], Michael Okun[6], Wayne K. Goodman[8], Amy L. McGuire[1], Gabriel Lázaro-Muñoz[1]   / Contact: [email protected]
1. Center for Medical Ethics and Health Policy, Baylor College of Medicine; 2. School of Medicine, Baylor College of Medicine; 3. Department of Anatomy & Neurobiology, University of Puerto Rico School of Medicine; 4. Program in Bioethics, University of California, San Francisco; 5. Department of Neurosurgery, University of California San Francisco; 6. Norman Fixel Institute for Neurological Diseases and the Program for Movement Disorders and Neurorestoration, Department of Neurology, University of Florida, Gainesville; 7. Department of Biomedical Engineering, University of Florida, Gainesville; 8. Department of Psychiatry and Behavioral Sciences, Baylor College of Medicine;

The scientific and neuroethics literature have emphasized the possibility of changes in personality, identity, mood, and behavior (PIMB) among recipients of deep brain stimulation (DBS). The precise frequency, magnitude, and nature of these changes are understudied. Here, we report preliminary results of semi-structured interviews conducted pre-surgery and 6 months post-surgery with patient-participants (n=16) enrolled in experimental trials of DBS for movement and psychiatric disorders.

Pre-surgery, most participants described their symptoms as impacting their social interactions and relationships. Participants also described decreased confidence and self-esteem, sometimes due to social stigma. Several participants attributed these experiences to symptoms of their disorder, which they viewed as negatively impacting their personality or identity, at times invoking concepts of normality and disability.

At 6 months post-surgery, several of these same participants reported having returned to a desired pre-disorder identity or sense of self. Alternatively, one participant reported feeling like a "new person" (in a positive sense) as a result of DBS. Most other participants reported no major changes in personality or identity following surgery. In all of these groups, positive PIMB impacts included improvements in sociality, relationships, and mood, lower anxiety, and greater ability to pursue life goals.

Several participants described physical aspects of the device such as the ability to feel or see protrusions of the implanted pulse generator and/or wires located in the neck or scalp. While mildly bothersome for a few participants, physical aspects do not seem to have impacted body image or other aspects of identity. A few participants reported more severe negative PIMB-related effects. One described significant but temporary post-operative effects including difficulty speaking and pronounced social withdrawal. Two participants described markedly increased, unwanted emotionality.

Overall, participants reported few negative PIMB-related impacts of the device, instead emphasizing positive changes. These findings raise important questions about how to conceptualize the complex relationship between target disorders, DBS, and PIMB changes.

References:

None

Disclosure: None

 

Abstract 37  /  Presentation

Neuroethical challenges of screening for brain injury in women who have experienced intimate partner violence

Quinn Boyle (1, 3), Deana Simonetto (2), Paul van Donkelaar (3), Judy Illes (1)   / Contact: [email protected]
1. Neuroethics Canada, Division of Neurology, Department of Medicine, University of British Columbia, 2. Department of History and Sociology, University of British Columbia Okanagan, 3. School of Health and Exercise Sciences, University of British Columbia Okanagan

Background

One in three women will experience intimate partner violence (IPV) in their lifetime, and up to 92% will suffer a brain injury (BI) associated with one or more violent incidents1–3. With BI comes physical and mental symptoms, all of which could be addressed with proper health care and intervention. Strategies for BI identification in and rehabilitation for the IPV population are lacking, however.4 This population is generally marginalized and underserved, and the potential impacts of a BI diagnosis outside of the health care setting are poorly understood. The ethical implications for adjudicating parenting disputes in family law when IPV-BI may be a variable are particularly acute. Here we explored the implications of a BI diagnosis on parenting disputes with the goal of informing larger-scale IPV-BI research and much needed policy for the first time within the sphere of neuroethics.

Methods

We combined elements of pragmatist, feminist, and utilitarian ethics to develop a guide for semi-structured interviews with family lawyers at the frontlines of parenting disputes. We integrated into the interviews contrastive vignettes that described hypothetical scenarios involving clients who have experienced IPV. The vignettes were identical except for the presence or absence of an IPV-related BI. We used a constructivist grounded theory analysis to code emergent themes and interpret findings.

Results

Twelve in-depth interviews were conducted with lawyers whose primary practice is family law (9 women, 3 men; mean 46.3 years old; 12.3 years in practice). Results reflect current Canadian legislation that is focused on the best interests of the child, but reveal a porousness that leaves legislation open to interpretation and manipulation. IPV-BI, and other confounding factors such as the legal responsibility of counsel, legal aid status, legal precedent, and the expectations of mothers, all emerged as substantive themes in this context.

Discussion

There is a long history of weaponizing health information against women in family law.5 The findings of this study suggest that a lack of legal precedent, inadequate education, and the inability to causally link an incident of IPV to BI leave women legally vulnerable to opposing counsel who will attempt to undermine her credibility and capacity to parent. This weaponization of IPV-BI, therefore, puts the best interests of the child at risk. We conclude with recommendations for the ethical continuation of IPV-BI screening while equipping women to pragmatically navigate a patriarchal legal system that challenges both their autonomy and capacity for caring and decision-making.

References:

  1. WHO, Department of Reproductive Health and Research, London School of Hygiene and Tropical Medicine, South African Medical Research Council. Global and Regional Estimates of Violence against Women. World Health Organization; 2014.
  2. Campbell J.C, Anderson J.C, McFadgion A, et al. The effects of intimate partner violence and probable traumatic brain injury on central nervous system symptoms. J Women’s Heal. 2018;27(6):761-767.
  3. Hunnicutt G, Lundgren K, Murray C, Olson L. The intersection of intimate partner violence and traumatic brain injury: A call for interdisciplinary research. J Fam Violence. 2017;32(5):471-480.
  4. Pico-Alfonso MA, Garcia-Linares IM, Celda-Navarro N, Blasco-Ros C, Echeburúa E, Martinez M. The impact of physical, psychological, and sexual intimate male partner violence on women’s mental health: Depressive symptoms, posttraumatic stress disorder, state anxiety, and suicide. J Women’s Heal. 2006;15(5):599-611.
  5. Zaccour S. Crazy women and hysterical mothers: The gendered use of mental-health labels in custody disputes. Can J Fam L. 2018;31:57.

Disclosure: None

 

Abstract 38  /  Presentation  /  TOP ABSTRACT (AJOB NEUROSCIENCE)

AJOB Neuroscience cover title

Top Abstract

The qualitative empirical research into the ethics of brain computer interfaces

Abigail Presley, Allen Coin, and Veljko Dubljević   / Contact: [email protected]
North Carolina State University

Since the first publication about brain-computer interfaces (BCI) almost half a century ago, this area of science has retained a ‘futuristic' outlook [1]. Research into BCI technology has progressed rapidly in recent years, prompting increased scholarly interest in the pertinent ethical and social issues [2]. As the (mostly positive) media representation of BCI technology drastically increases, apprehension about indirect pressure to use the technology and over-promising of BCI medical utility grows [3], while professionals report an increase in ethical concerns [4]. With this in mind, we conducted a first-of-its-kind principled literature review focused on analyzing all empirical papers published about BCI ethics to investigate the moral and societal implications of this technology. We focus on the available empirical literature in order to ground the ethical discussion in fact, as opposed to fiction [5].

Our search was conducted in PubMed and Web of Science utilizing structured queries, and yielded 413 sources. 124 were excluded at title-level screening, 154 were excluded at abstract-level screening, and 31 were excluded as tangential during coding, leaving a final sample of 18 articles. Inclusion criteria included publications that were (a) in English, (b) in a peer-reviewed journal, (c) an original report of qualitative empirical data, and (d) relevant to ethical issues of BCIs. The most frequently discussed ethical concern was Psychological Factors (77.8%), a category comprising of psychological disruptions emerging from BCI use (e.g., fatigue, frustration, or depression/anxiety). Discussed at nearly the same frequency were Societal Implications and Usability and Feasibility (72.2 %). The former category largely discussed BCI influences on burden of care, while the latter focused on "BCI illiteracy," or the inability to properly control BCI devices. User Safety, Research Ethics and Informed Consent, and Humanity and Personhood were discussed at an equal frequency (66.7%). The related categories of Autonomy and Responsibility and Regulation were also discussed at equal frequencies (61.1%), followed by Privacy and Security (55.6%), which included discussions of BCI-related privacy breaches. Dependence (38.9%) is an emerging two-fold theme gaining increasing notice in BCI ethics literature within recent years, in the form of 1) dependence on the technology, and 2) physical dependence on caretakers. Overall, the empirical literature suggests that a multitude of ethical and social concerns that may prevent the integration of BCI technology into everyday use both persist and are currently emerging. This prompts further neuroethics investigation as to how to proceed with BCI development and device regulation.

References:

  1. Coin, A. & Dubljević, V. (2020): The Authenticity of Machine-Augmented Human Intelligence: Therapy, Enhancement, and the Extended Mind, Neuroethics, https://doi.org/10.1007/s12152-020-09453-5.
  2. Coin, A., Mulder, M. & Dubljević, V. (2020): Ethical Aspects of BCI Technology: What is the State of the Art? Philosophies, doi:10.3390/philosophies5040031
  3. Gilbert, F., Pham, C., Viaña, J.N. & Gillam, W. (2019). Increasing Brain-Computer Interface Media Depictions: Pressing Ethical Concerns. Brain-Computer Interfaces, DOI:10.1080/2326263X.2019.1655837.
  4. Kögel, J., Schmid, J.R., Jox, R. J., & Friedrich, O. (2019). Using brain-computer interfaces:A scoping review of studies employing social research methods. BMC Medical Ethics 20:18. https://doi.org/10.1186/s12910-019-0354-1
  5. Voarino, N., Dubljević, V. & Racine E. (2017): tDCS for memory enhancement: A critical analysis of the speculative aspects of ethical issues, Frontiers in Human Neuroscience, DOI: DOI: 10.3389/fnhum.2016.00678.

Disclosure: None

 

Abstract 39  /  Presentation

Pediatric Deep Brain Stimulation: Clinicians’ Perspectives on the Most Pressing Ethical Challenges

Kristin Kostick(1), Lavina Kalwani(1), Laura Torgerson(1), Katrina Muñoz(1), Clarissa Sanchez,(1) Peter Zuk(1), Eric A. Storch(1), Jennifer Blumenthal-Barby(1), Gabriel Lázaro-Muñoz(1)   / Contact: [email protected]
1. Baylor College of Medicine

Pediatric deep brain stimulation (pDBS) is increasingly being used to manage treatment-resistant dystonia, and certain movement disorders. However, there has been little systematic research about the safety and efficacy of pDBS or empirical neuroethics research to identify challenges and potential solutions to maximize benefits and minimize potential harms of pDBS. Clinicians (n=28) who care for minors with treatment-resistant dystonia were interviewed for their perspectives on the most pressing ethical issues in pDBS. Using thematic content analysis to explore salient themes, we identified five main pressing concerns: 1) remaining unknowns about risks and benefits of pDBS (73%) that pose a challenge to informed decision making; 2) decision-making roles (50%), including how best to integrate perspectives from diverse stakeholders (patient, caregiver, clinician) and how to manage surrogate decisions on behalf of pediatric patients with limited capacity to make autonomous decisions; 3) ensuring informed consent and decision quality (46%) in the context of patient and caregivers' expectations for treatment; 4) structural barriers impacting access to pDBS (35%), including uncertainties in insurance coverage potentially resulting in high out-of-pocket costs for families, and 5) regulatory status (27%) such as the lack of FDA approved indications that contribute to decision-making uncertainty and liability. These results point to a need for greater clarity about how to involve key stakeholders – including children – in decision-making about pDBS in the context of high hopes and expectations but also information scarcity about likely outcomes. They also call for policy solutions to guide indications and ensure treatment access.

References:

None

Disclosure: None

 

Abstract 40  /  Presentation  /  TOP ABSTRACT (AJOB NEUROSCIENCE)

AJOB Neuroscience cover title

Top Abstract

Ethical perspectives from AI experts on reverse-engineering the brain

Sean Douglas1, Nora Edgren1 and Veljko Dubljević1   / Contact: [email protected]
North Carolina State University

Background: The future of artificial intelligence is far from certain, but AI presents many immediate concerns and research opportunities for ethical decision making in AI [1]. Of these, using AI to reverse-engineer the brain may aid researchers in understanding both human and artificial intelligence, but there is little empirical ethics research into which aspects of this endeavor are the most relevant or feasible. Additionally, as in other areas of neuroethics scholarship there is a need to separate urgent from speculative issues [2].

Methods: Building on prior work [3], our study centers on stakeholder interviews with computer science and engineering experts specializing in AI near Raleigh, North Carolina, and we seek to discern the issues, concerns, and directions of future research involving reverse-engineering the brain through AI.

For this study, we used qualitative methods and a structured Delphi study [4] in order to get a comprehensive grasp on what experts in the field felt were pertinent areas as AI advances. We consulted nine experts who agreed to join the Delphi panel after the initial interview. In the interviews, we asked these experts to elaborate on their ideas and used coding to consolidate the answers into manageable, short statements which were sent back to the experts in two rounds of surveys so that panelists could rank them based on desirability, confidence, and feasibility [5].

Preliminary findings: One of the main concerns was "leaving the human out of the book." Ultimately, we found that researchers were concerned with the explainability of AI and how humans would interface with a reverse-engineered brain. Some respondents were skeptical of the actual viability of current approaches to reverse engineering the brain (e.g. neural networks) and whether the seeming fervor behind them was outpacing their actual viability. Others even saw it as two separate issues: using AI to help illuminate human neuroscience and using AI to influence the behavior of humans. These points speak to the overwhelming call by almost all respondents to "proceed cautiously" with this research.

Preliminary conclusions: Given the open-ended potential for AI to shape society and aid both human and artificial intelligence, it is imperative that there is an understanding of the best practices in AI research and the implications for neuroethics. Our study shows that there is a strong desire among AI researchers to keep ethics and public good in mind when training AI systems to reverse-engineer the brain.

References:

  1. Bauer, W.A. & Dubljević, V. (2019). AI Assistants and the Paradox of Internal Automaticity, Neuroethics, 13:303-310. https://doi.org/10.1007/s12152-019-09423-6.
  2. Racine, E., Dubljević, V., Jox, R., Baertschi, B., Christensen, J.F., Farisco, M., Jotterand, F., Kahane, G. & Müller, S. (2017):Can neuroscience contribute to practical ethics? A critical review and discussion of the methodological and translational challenges of the Neuroscience of Ethics, Bioethics 31(5): 328-337.
  3. Dubljević, V., Douglas, S., Milojevich, J., Ajmeri, N., Bauer, W.A., List, G.F. & Singh, M.P. (2021). Moral and Social Ramifications of Autonomous Vehicles, ArXiv http://arxiv.org/abs/2101.11775
  4. Linstone, H.A. & Turoff, M. (1975). The Delphi Method: Techniques and Applications. Reading Ma: Addison-Wesley Publishing Company.
  5. Schmidt, R. C. (1997). Managing Delphi Surveys Using Nonparametric Statistical Techniques. Decision Sciences, 28(3), 763–774.

Disclosure: None

 

Humanistic

Abstract 41  /  Presentation

Protecting individuals and societies from brain and mental data technologies: a structured landscape review

Anita Jwa (1), Nicole Martinez-Martin (2)   / Contact: [email protected]
1. Stanford University; 2. Stanford Center of Biomedical Ethics;

Advances in neurotechnologies, artificial intelligence (AI) and Big Data analytics are allowing devices to interpret data patterns to identify and even predict mental states.

In the current data landscape, personal information has been called the "new plutonium," in terms of monetary value and great potential harm to individuals and society. Data that assesses and predicts mental states can be used to monitor and even manipulate people. Furthermore, there are avenues through which neural and behavioral data can move into the consumer sphere, be re-identified and brokered.1 There is mounting urgency to develop approaches to strengthen protections of brain and behavioral data.2 Many such approaches focus primarily on neural data, depicting brain data as exceptionally sensitive. Cutting-edge neurotechnologies, such as brain computer interface (BCI), can, at least partly, decode neural signals to infer one's perceptual, emotional, or intentional states and are further making steps towards altering behaviors and cognitive functioning through directly modulating neural activation.3-5 At the same time, technologies, such as digital phenotyping, which can generate predictions of mental states from a range of different types of personal data, such as smartphone data to electronic medical records, demonstrate the potential invasiveness of computational behavioral analytics. We surveyed the ethics and neuroscience literature to identify the range of reasons offered for establishing protections of neural data and for protecting people from the risks of behavioral inferences that can be drawn from personal information. We created a matrix in which we compared 1) the current and projected ways that neural and behavioral analytics can be used to draw inferences from and influence behavior; and 2) the primary reasons given in the literature for protecting these types of data. Given the current exploratory state of neurotechnology, behavioral data are likely to be more predictive of mental states than brain data. The rationale behind brain data protection is largely predicated on the intimate nature of the data as correlates of mental state rather than their predictive power. We recommend that a functional approach, attending to the how data maybe used and potential harms that stem from that use, for data protection is necessary, particularly since neural data may be combined with other personal data for more precise and invasive analyses of behavior. We also note the need to provide protections for both individual and societal harms that can result from technologies that are predictive of mental states.

References:

  1. Wachter S, Mittelstadt B. A Right to Reasonable Inferences: Re-Thinking Data Protection Law in the Age of Big Data and AI. Social Science Research Network; 2019. Accessed May 7, 2019. https://papers.ssrn.com/abstract=3248829
  2. Goering, S., Klein, E., Specker Sullivan, L., Wexler, A., Aguera, Y. A. B., Bi, G., . . . Yuste, R. (2021). Recommendations for responsible development and application of neurotechnologies. Neuroethics, 1-22. doi:10.1007/s12152-021-09468-
  3. Kellmeyer, P. (2021). Big Brain Data: On the responsible use of brain data from clinical and consumer-directed neurotechnological devices. Neuroethics, 14(1), 83-98. doi:10.1007/s12152-018-9371-x
  4. Rainey, S., Martin, S., Christen, A., Megevand, P., & Fourneret, E. (2020). Brain recording, mind-reading, and neurotechnology: Ethical issues from consumer devices to brain-based speech Decoding. Sci Eng Ethics, 26(4), 2295-2311. doi:10.1007/s11948-020-00218-0
  5. Velasquez-Manoff, M (2020, Aug. 28). The Brain implants that could change humanity. The New York Times. https://www.nytimes.com/2020/08/28/opinion/sunday/brain-machine-artificial-intelligence.html

Disclosure: None

 

Abstract 42  /  Presentation  /  TOP ABSTRACT (AJOB NEUROSCIENCE)

AJOB Neuroscience cover title

Top Abstract

Positioning neurorights in Ibero-America

José M. Muñoz (1-3), Diego Alejandro Borbón Rodríguez (3-4), María Isabel Cornejo Plaza (5), Agustín A. Herrera Fragoso (3,6), José Ángel Marinaro (7-8), Sahara Lucía Rosero Huertas (4), José Julián Tole (4), Karen Herrera-Ferrá (3)   / Contact: [email protected]
1. Grupo Mente-Cerebro, Instituto Cultura y Sociedad (ICS), Universidad de Navarra, Spain; 2. Centro Internacional de Neurociencia y Ética (CINET), Fundación Tatiana, Spain; 3. Asociación Mexicana de Neuroética (AMNE), Mexico; 4. Observatorio Latinoamericano de Derechos Humanos y Empresas, Universidad Externado de Colombia; 5. Universidad Autónoma de Chile; 6. UNESCO Chair in Bioethics and Human Rights, Rome, Italy; 7. Universidad Nacional de La Matanza, Argentina; 8. Fundación de Estudios para la Justicia (FUNDEJUS), Argentina.

Emergent concerns regarding human rights related to the use of neurotechnology and AI (Ienca & Andorno, 2017; Yuste et al., 2021) are increasingly a priority in academic discourse. However, it is necessary to include greater cultural diversity in this discussion to better achieve a global consensus, which can be attained by developing groups of scholars that represent specific cultural regions. Accordingly, we have created the interdisciplinary group "Neurorights Ibero-America," represented by scholars from Mexico, Colombia, Spain, Argentina, and Chile, to further analyze regional concerns.

When considering diversity and contexts, we believe that reaching a consensus about the definition of universal neurorights should be complemented by heterogeneous specific implementations. Like many world regions, Ibero-America is a cultural mosaic in which issues related to privacy, autonomy, and neuroenhancement, among others, are influenced by structural inequalities both between and within countries. This characteristic results in ethical and practical problems that directly affect the effective implementation of human rights.

Regional concerns about neurorights are also related to the conceptual depiction of these rights (see Muñoz, 2019). Ideas such as free will, identity, privacy, and equality are culturally changeable and take on different meanings depending on the country or region being considered (see Berniūnas et al., 2021). Cultural diversity within countries is also of critical relevance, as in the case of indigenous cosmovisions in Latin America and many other parts of the world. These issues invite us to reflect on how cultures, philosophical concepts, and the law are intimately intertwined and cannot be adequately analyzed as strictly separate realms.

Among our group's main goals is the search for a taxonomy including hierarchical and horizontal, axiological, and conceptual interdependencies between the neurorights proposed by Ienca and Andorno (2017) and the NeuroRights Initiative (see https://nri.ntc.columbia.edu). This taxonomy may facilitate establishing Ibero-American specific regulations that include basic expressions of autonomy, agency, identity, and integrity adapted to our specific legal tradition and legal systems. It is also important that the creation of country-specific norms be compatible with—and supplement, if necessary—regional treaties and protection systems (e.g., the Inter-American Human Rights System).

In sum, we aim to promote a dialogue in conjunction with academic, social, and political stakeholders to promote universal neurorights not by adopting relativistic positions but with the conviction that such rights should suit our specific sociocultural context. Accordingly, this presentation will focus on the operations of our group and on neurorights issues in our regional context.

References:

  • Berniūnas, R., Beinorius, A., Dranseika, V., Silius, V., & Rimkevičius, P. (2021). The weirdness of belief in free will. Consciousness and Cognition, 87, Article 103054. https://doi.org/10.1016/j.concog.2020.103054
  • Ienca, M., & Andorno, R. (2017). Towards new human rights in the age of neuroscience and neurotechnology. Life Sciences, Society and Policy, 13, Article 5. https://doi.org/10.1186/s40504-017-0050-1
  • Muñoz, J. M. (2019). Chile—Right to free will needs definition. Nature, 574(7780), 634. https://doi.org/10.1038/d41586-019-03295-9
  • Yuste, R., Genser, J., & Herrmann, S. (2021). It’s time for neuro-rights. Horizons, 18, 154¬¬–164. https://www.cirsd.org/en/horizons/horizons-winter-2021-issue-no-18/its-time-for-neuro--rights

Disclosure: None

 

Abstract 43  /  Presentation

Breaking the sixth strategic domain (a quantum-existentialist perspective of security)

Luis Jacob Retanan   / Contact: [email protected]
Zhejiang University

How do you know if your mind is secured when the only thing that can tell you that is so is your own mind? The militarization of cognitive technologies is fueling the emergence of a new strategic domain of warfare, which renders the human mind into a contested and controllable battlespace. This raises serious implications not only to the practice but also to the very conception of security. It comes from the fact that the realizability of mind control entails the weaponization of certainty itself as it is ultimately through the mind that one is able to ascertain anything. What then seems to be the problem of this domain is that it leverages on the fundamentality of consciousness – the inseparability of subject and object in the cognitive realm – which makes it impossible to begin with to determine if one's own thoughts and perceptions are actually of his own. Thereby, in this domain of war, security becomes inconceivable as freewill becomes indeterminable. But this paper would emphasize that this domain only renders security unthinkable if security itself is equated with certainty – a conception based on the worldview of metaphysical realism, which provides no genuine conceptual space for freewill. Hence, this paper argues that (1) the "classical" conception of security (CCS), which has so far shaped positivist and interpretivist security theories in the field of International Relations (IR), is inadequate to address this emerging domain given its metaphysical realist inclination towards certainty, separability, and objectivity, while (2) a "quantum-existentialist" perspective of security (QEPS), which is built on the Copenhagen Interpretation of Quantum Mechanics and Sartrean Existentialism, is more able to deal with this domain as its philosophies are predicated on uncertainty, inseparability and unknowability. This paper explicates these arguments by employing a skeptic or anti-philosophical approach in critiquing CCS, and in establishing the metaphysical anti-realist foundations of QEPS. The aim of formulating QEPS is to contribute in safeguarding human agency by hindering this cognitive domain of warfare in becoming irreversibly realized. It can do so by "breaking it from within" through providing a prospective framework in reconceptualizing the prevailing deterministic view on (a) the constitutive aspect of cognitive technologies (i.e., how these technologies become extensions of the human mind) through existential neuroethics, and (b) the direction of their convergence (i.e., how these technologies are designed to become like human minds) through an anti-realist model of quantum computing.

Keywords: philosophy, technology, security, mind

References:

  • Booth, Ken, Theory of World Security (Cambridge: Cambridge University Press, 2007).
  • Sartre, Jean-Paul, Being and Nothingness: An Essay on Phenomenological Ontology (1943).
  • Heisenberg, Werner, Physics and Philosophy: The Revolution in Modern Science (New York: Harper & Brothers Publishers, 1958).
  • Giordano, James (ed), Neurotechnology in National Security and Defense: Practical Considerations, Neuroethical Concerns (Florida: Taylor & Francis Group, 2015).
  • Kieu, Tien, Computing the Noncomputable (Melbourne: Swinburne University of Technology, 2018).

Disclosure: None

 

Abstract 44  /  Presentation

Moral bioenhancement as a challenge to the achievement of intergenerational justice

1. Silviya Serafimova   / Contact: [email protected]
1. Bulgarian Academy of Sciences

The primary objective of this talk is to show why moral bioenhancement (MBE) understood as a use of biomedical technology for the purposes of making people morally better (Persson and Savulescu 2012; Persson and Savulescu 2013) raises some crucial concerns about the achievement of intergenerational justice.

I explore the reasons behind what I consider as two major concerns about MBE. First, why the approval of MBE as a preventive measure against the so-called global existential threats (which include but are not limited to the use of weapons of mass destruction, devastating global climate change and some other disastrous phenomena (Persson and Savulescu 2012) (Sparrow 2014)) does not mean that MBE implies a just treatment by default. Second, why even if MBE is successfully introduced making individuals "more moral" in short terms, its implementation does not necessarily support intergenerational justice per se.

In this context, I address the future benefits of distinguishing between what is defined as moral ex ante, viz. before MBE's deliberate modification of individuals' behavior and dispositions and what is defined as moral ex post, viz. after the introduction of MBE. The particular implications of these benefits are traced to the way of improving the relationships between moral and just within the framework of MBE.

I try to sketch the potential ethical challenges when what is considered as just in terms of preventing global existential threats, as evaluated from the perspective of intragenerational justice (justice here and now) confronts what can be considered as "more just" in the future; specifically, when the MBE is refracted through the lens of intergenerational justice.

References:

  • Persson, I. and J. Savulescu. 2012. Unfit for the future: The need for moral enhancement. Oxford: Oxford University Press.
  • Persson, I. and J. Savulescu. 2013. Getting moral enhancement right: The desirability of moral bioenhancement. Bioethics, 27(3): 124-131.
  • Rakić, V. 2017. Moral bioenhancement and free will: Continuing the debate. Cambridge Quarterly of Healthcare Ethics, 26(3): 384-393.
  • Sparrow, R. 2014. Egalitarianism and moral bioenhancement. American Journal of Bioethics, 14(4): 20-28.

Disclosure: None

 

Abstract 45  /  Presentation  /  TOP ABSTRACT (AJOB NEUROSCIENCE)

AJOB Neuroscience cover title

Top Abstract

Considerations in Treating the Deeply Forgetful Cerebral Subject

Anthony G. Chesebro, Krystal K. Laing   / Contact: [email protected]
1. Stony Brook University; 2. Columbia University, Irving Medical Center;

Over the past decades, the widespread inclusion of neuroscience in popular media, combined with the general interest in these topics, has led to a personification of the brain causing patients to view themselves as "cerebral subjects" (Vidal, 2009). This identification with a cerebral subject, or the identification of the self with the brain, has led to the conceptualization of the brain as the location of the "modern self" (Vidal, 2009). This cerebral self, however, is not the daily self, but instead constitutes a mundane dimension that is brought to the forefront of the individual's attention through personal experience of illness (Pickersgill et al., 2011). Alzheimer's disease, carrying with it the burden of "deep forgetfulness" (Post, 2000), exists in a concurrent social and biological reality (Karner and Bobbitt-Zeher, 2005), lying in a unique position of many unknowns regarding the biological assault upon the brain, while those individuals suffering from Alzheimer's lose their cerebral selves as their memory gradually fades.

The recent FDA approval of the monoclonal antibody aducanumab as a new therapeutic for Alzheimer's disease provides an ethical dilemma positioned directly at this intersection of biological and social experiences. Hailed as a treatment that would offer hope in a previously intractable disease (Cummings et al., 2021), aducanumab notably fails to meaningfully impact lived experience of dementia. It succeeds in its primary goal of clearing amyloid beta protein aggregates – a biological hallmark of Alzheimer's disease – from the brain, but carries a significant risk of edema and microhemorrhages as potential side effects, and does not significantly alter the trajectory of cognitive decline (Cummings et al., 2021).

Pickersgill et al. propose that the cerebral subject lends significance to the brain only when it becomes dysfunctional, becoming aware of pain, disability or impairment through the lens of subjectivity, (2011) such as during the onset of a neurological disorder. Aducanumab offers an ethical quandary, as it treats the scientific dysfunction of misfolded proteins without alleviating the subjective awareness of forgetfulness that constituted the first assault upon the cerebral subject. Building on these prior works, this presentation investigates the ethical implications of offering a treatment that addresses only the biological substrates of an illness, while ignoring the lived experience of the cerebral subject. Here it is argued that the inadequate addressing of deep forgetfulness experienced by Alzheimer's patients, while describing the drug as a treatment, forms a new affront to the cerebral self.

References:

  • Cummings, J., Aisen, P., Lemere, C. et al. (2021). Aducanumab produced a clinically meaningful benefit in association with amyloid lowering. Alz Res Therapy 13, 98. doi.org/10.1186/s13195-021-00838-z.
  • Karner, T.X. and Bobbitt-Zeher, D. (2005). Losing Selves: Dementia Care as Disruption and Transformation. Symbolic Interaction, 28: 549-570. doi.org/10.1525/si.2005.28.4.549
  • Pickersgill, M., Cunningham-burley, S., & Martin, P. (2011). Constituting neurologic subjects: Neuroscience, subjectivity and the mundane significance of the brain. Subjectivity, 4(3), 346-365. doi:http://dx.doi.org/10.1057/sub.2011.10.
  • Post, S. G. (2000). The moral challenge of Alzheimer disease (p. 5). The Johns Hopkins Univ. Pr.
  • Vidal F. (2009). Brainhood, anthropological figure of modernity. Hist Human Sci. 22(1):5-36. doi:10.1177/0952695108099133.

Disclosure: None

 

Abstract 46  /  Presentation

Participatory machine learning and social justice in the personalization of neurological interventions

Ashley Walton   / Contact: [email protected]
Dartmouth College, Department of Philosophy

Machine learning algorithms are being developed to inform decisions about how and when to deliver medical interventions, with a particular focus on personalization, or the adaptation of treatment according to individual patient needs. "Participatory" machine learning approaches have been proposed that engage patients as active contributors to the design and development of these algorithms, with the aim of obtaining a diverse data sample as well as address issues of fairness and bias in machine learning that have been shown to exacerbate and proliferate racial disparities(1,2). However, recent work in the area of equity and inclusion warns of the potential for research processes to serve as a form of extraction rather than empowerment. Researchers have identified issues related to the narratives surrounding data collection(1), definitions of data categories, or ontological oppression(3,4), and data ownership and control(2). I will expand on these issues as they relate to the design of personalized machine learning algorithms for the delivery of neurological interventions, such as neurostimulation for chronic pain and neuropsychiatric illness. I will critically examine the processes for defining units of measurement that describe the experiences and symptoms that might be targeted by a neurological intervention, as well as the analytical approaches by which algorithms become "personalized". In doing so I will draw upon critiques of "race-based" medicine in genetics that demonstrate how personalization in healthcare can obscure or pull focus away from structural inequalities as the cause of racial health disparities(5). Looking forward, I will describe potential approaches to participatory machine learning for neurological interventions that prioritize social justice, sustaining patient agency, and avoiding incurring unnecessary burden.

References:

  1. Watson-Daniels, J. (2020, July). Beyond Fairness and Ethics: Towards Agency and Shifting Power. Paper presented at the meeting of International Conference on Machine Learning, Virtual.
  2. Sloane, M., Moss, E., Awomolo, O., & Forlano, L. (2020). Participation is not a design fix for machine learning. arXiv preprint arXiv:2007.02423.
  3. Brown, T. (2021, June). Symposium: Achieving Diversity, Equity and Inclusion in Neuroscience Research in Under-Served, Under-Resourced and Remote Settings. Paper presented at the National Institutes of Health BRIAN Investigators Annual Meeting, Virtual.
  4. Dembroff, R. (2018). Real talk on the metaphysics of gender. philosophical topics, 46(2), 21-50.
  5. Roberts, D. (2011). Fatal invention: How science, politics, and big business re-create race in the twenty-first century. New Press/ORIM.

Disclosure: None

 

Abstract 47  /  Presentation  /  TOP ABSTRACT (AJOB NEUROSCIENCE)

AJOB Neuroscience cover title

Top Abstract

Electroconvulsive Therapy in Argentina: The Disagreement between the Public Policy and the Scientific Consensus

1. Paula Castelli 2. Salvador Guinjoan 3. Nicolás Serrano 4. Abel Wajnerman Paz 5. Arleen Salles   / Contact: [email protected]
1. Programa de Neuroética-CIF /Buenos Aires University 2. Laureate Institute for Brain Research 3. Programa de Neuroética-CIF /Buenos Aires University 4. Programa de Neuroética-CIF/ Alberto Hurtado University 5. Programa de Neuroética-CIF/ CRB Uppsala University

When assessing the implementation of the National Mental Health Law (Ley Nacional de Salud Mental 26.657) according to which medical treatments should be shaped by ethical and scientific considerations, Argentina's Ministry of Justice and Human Rights (MJHR) recommends the prohibition of Electroconvulsive Therapy (ECT), a well-established method for treating certain psychiatric conditions.

From a scientific point of view, ECT is considered the gold standard for the treatment of conditions such as severe depression with melancholic, psychotic, or treatment-resistant features and in treatment-resistant psychosis. However, ECT is often underutilized for non medical reasons. For example, according to the document issued by the MJHR not only have psychotropic medications rendered ECT obsolete (medical reason): the recommendation states that ECT has been (or could be) used as a punitive measure in psychiatric hospitals (NIH, 1985), and refers to some arguments provided by the antipsychiatry movement as well. In particular, the document associates ECT with clandestine torture practices performed during the country's last miltary dictartorship, and it refers to the Convention on the Rights of Persons with Disabilities and its article 15 "Freedom from torture or cruel, inhuman or degrading treatment or punishment" to recommend its prohibition.

In presenting these considerations, Argentina is not alone. For example, in Italy the general public's association of ECT with torture practices during fascism, and the lack of knowledge of health professionals regarding ECT's technical aspects and safety make it a controversial practice. However, the Italian highest legal and health authorities recognize the ethical and/or scientific reasons for using ECT (Buccelli et al. 2016; Adaglio et al. 1998). In contrast, in some Latin American countries like Argentina and Brazil (Ribeiro 2012) the call for banning the procedure appears to come from the executive branch (even when the relevant laws of each country remain silent regarding the status of the procedure).

This research focuses on Argentina and examines two main issues: 1- How socio-political and historical factors have shaped the understanding of ECT in general and MJHR's recommendation to ban it in particular and 2- the autonomy, beneficence, and justice related implications of this recommendation on a specific set of patients. Our goal is to unveil and clarify hidden biases and assumptions in order to foster a more fruitful debate on an issue that at the legal level is still pending.

References:

  • Adaglio, M. Ghini, V. Rodriguez Zani, A. (1998). Terapia electroconvulsiva. Alcmeon. Revista Argentina de Clínica Neuropsiquiátrica, 7 (2). https://www.alcmeon.com.ar/7/26/alc26_05.htm Last accessed July 10th 2021
  • Buccelli C, Di Lorenzo P, Paternoster M, DʼUrso G, Graziano V, Niola M. (2016). Electroconvulsive Therapy in Italy: Will Public Controversies Ever Stop? Journal of ECT. 32(3):207-11.
  • Ley Nacional de Salud Mental (26.657) http://servicios.infoleg.gob.ar/infolegInternet/anexos/175000-179999/175977/norma.htm. Last accessed July 10th 2021.
  • National Institutes of Health (1985) Electroconvulsive therapy: Consensus statement online. June 10–12. 5(11): 1–23. http://consensus.nih.gov/cons/051-statement.htm. Last accessed July 10th 2021
  • Ribeiro RB, Melzer-Ribeiro DL, Rigonatti SP, Cordeiro Q. (2012) Electroconvulsive therapy in Brazil after the "psychiatric reform": a public health problem -example from a university service. Journal of ECT. 28(3):170-3.

Disclosure: None

 

Abstract 48  /  Presentation

Lessons in pedagogy from teaching neuroethics in year one of the COVID-19 pandemic

Ann E. Fink (1), Gillian Hue (2)   / Contact: [email protected]
1. Dept. of Biological Sciences, Lehigh University, Bethlehem, PA; 2. Neuroscience & Behavioral Biology Program, Emory University, Atlanta, GA;

Crises offer opportunities to examine core principles and values around which institutions are organized. Here, we explore what the COVID-19 pandemic has meant for teaching and learning of neuroethics, and for general pedagogical practice. One year ago, we shared insights on teaching neuroethics amidst the pandemic and associated crises [1]. Millions of people worldwide have now died as a result of SARS-CoV2-related illness [2], and untold numbers may suffer from lingering illness (long COVID). Public health experts warned that marginalized populations were bearing the brunt of the pandemic; these warnings are unhappily confirmed in uneven rates of illness and death on a global scale and within wealthy, highly stratified nations like the US. In 2020, the US saw protest movements in response to extreme inequality and ongoing racist violence, yet 2021 began with a white supremacist attack on the US capitol and continued with attacks on critical race theory. In the midst of an ongoing public health crisis and reactionary pushback to social justice efforts, institutions and educators may struggle to act responsibly. Here, we describe our experiences as educators who worked collaboratively during this crisis in order to ask: what important learning took place during this year, and what responsibilities do educators have moving forward? First, while the virtual classroom was not always ideal, it presented key learning opportunities. Most importantly, this modality allowed accessibility for disabled students that is rare within higher education. Next, we were able to invite guest lecturers remotely, opening the classroom to a wider range of expert voices. Students also had important insights linking COVID-19 to neuroethics. For instance, analyzing inequities in vaccine access allowed contemplation of potential vaccine "classes" of personhood. Further unexpected insights included parallels between potential stigma involved in "disease" labeling of mental illnesses [3] or substance dependence [4] and COVID-19 stigma in relation to anti-Asian racial violence. Discussing long COVID and neurological impacts of COVID-19 also facilitated conversations about disability rights and mental health care accessibility. Students expressed general appreciation of ethical analysis, as it helped them to understand current crises. Finally, this year cemented key justice considerations within pedagogical practice, including universal accessibility as a cornerstone of disability rights and a need for intersectional analysis [5] in neuroethics. Teaching during this year highlighted the importance of grace and compassion within a liberatory educational framework, where sharing of power allows students and teachers to reason together about pressing moral problems.

References:

  1. Fink, A.E., & Hue, G. (2020). Teaching neuroethics in a time of crisis. International Neuroethics Society Meeting Abstracts, October 2020.
  2. John Hopkins Coronavirus Resource Center. (n.d.). Global map. Johns Hopkins University & Medicine. Retrieved July 12, 2021 from: https://coronavirus.jhu.edu/map.html
  3. Corrigan, P.W., Watson, A.C. (2004) At Issue: Stop the Stigma: Call Mental Illness a Brain Disease. Schizophrenia Bulletin, 30(3): 477-479.
  4. Hammer, R., et al. (2013). Addiction: Current Criticism of the Brain Disease Paradigm. AJOB Neuroscience, 4(3): 27-32.
  5. Crenshaw, K. (1991). Mapping the Margins: Intersectionality, Identity Politics, and Violence against Women of Color. Stanford Law Review, 43(6), 1241-1299.

Disclosure: None

 

Abstract 49  /  Presentation  /  TOP ABSTRACT (AJOB NEUROSCIENCE)

AJOB Neuroscience cover title

Top Abstract

Regulating Neurotech Through The "Think Tank"

Natalia Montes (1,2), Andreas Schönau (1,2)   / Contact: [email protected]
1. Department of Philosophy, University of Washington; 2. Center for Neurotechnology, University of Washington

Neurotechnologies, especially those enabled, facilitated, or supported by Artificial Intelligence (AI), are exponentially growing and are expected to impact and fundamentally shape countless aspects of our individual lives. As these technologies continue to advance at a rapid pace, the targeted product, the individual consumer, and the society as a whole are subject to a simultaneously growing number of ethical concerns, such as privacy, autonomy, security, and bias (Du & Xie 2021). These problems are global, and they are shaped by the influence of Big Tech (Google, Facebook, Amazon and Microsoft) along with other emerging neurotechnology companies. For example, the newly-formed corporation Neuralink is developing an invasive deep–brain stimulation (DBS) and multi-channel sensing platform that raises ethical considerations regarding physical health and safety, as well as data security and privacy (Dadia & Greenbaum, 2019).

While Google has created a team of ethicists dedicated to analyzing issues particular to A.I., skeptics worry that hired ethicists may not be or feel free to practice ethics and voice concerns within a corporate environment (Metz & Wakabayashi, 2020). When corporations delegate the responsibility of assessing and responding to ethical concerns to internal teams , they leave publics vulnerable to harms caused when business and operational decisions are prioritized over ethical ones (Bazerman & Tenbrunsel, 2011). This neglect of ethical concerns occurs even when embedded ethicists are involved (Metz & Wakabayashi, 2020). Concurrently, ethical regulations and guidelines addressing neurotechnologies in the United States, in which many of these companies do or will reside, have largely gone neglected (Esteve, 2017). This has left diverse publics waiting for the state to rectify egregious corporate errors while these, and other, companies continue developing neurotechnologies at increasing speeds with limited regulations.

To mediate the tension between potentially-biased self-regulation by corporations as an internal solution, and regulatory legal landscape as an external solution, we propose the development of an independent third party neuroethical entity: a think tank, or a research-based, non-governmental, non-profit organization. Such an entity should aim to accompany the ongoing growth of neurotech companies and offer tailored solutions to the neuroethical issues identified, while keeping public health and safety, in a neuroethical context, a priority. Without such an entity, the current state of underregulation of tech may perpetuate and exacerbate ethical problems arising from the rapid development of neurotechnologies.

References:

  • Du, Shuili, and Chunyan Xie. "Paradoxes of artificial intelligence in consumer markets: Ethical challenges and opportunities." Journal of Business Research 129 (2021): 961-974.
  • Dadia, Tal, and Dov Greenbaum. "Neuralink: The Ethical ‘Rithmatic of Reading and Writing to the Brain." AJOB neuroscience 10.4 (2019): 187-189.
  • Metz, Cade, and Daisuke Wakabayashi. “Google Researcher Says She Was Fired Over Paper Highlighting Bias in A.I.” The New York Times, The New York Times, 3 Dec. 2020, www.nytimes.com/2020/12/03/technology/google-researcher-timnit-gebru.html
  • Ethical Breakdowns.” Harvard Business Review, 1 Aug. 2014, hbr.org/2011/04/ethical-breakdowns.
  • Esteve, Asunción. "The business of personal data: Google, Facebook, and privacy issues in the EU and the USA." International Data Privacy Law 7.1 (2017): 36-47.

Disclosure: None

 

Abstract 50  /  Presentation  /  TOP ABSTRACT (AJOB NEUROSCIENCE)

AJOB Neuroscience cover title

Top Abstract

Why are neuro-rights important? Data economy and the privacy laws in South Korea

1. Ji Hyun Yang 2. Sung-Jin Jeong 3. Hee Tae Suk 4. In Young Lee 5. So Yoon Kim   / Contact: [email protected]
1. Yonsei University College of Medicine, 2. Research Group of Developmental Disorders and Rare Diseases, Korea Brain Research Institute(KBRI), Daegu, Korea. 3. Yonsei University Graduate School of Public Health 4. Hongik University 5. Yonsei University College of Medicine

As the data economy grows, the competitive dynamics of new markets spur firms to acquire predictive behavioral data to increase commercial profitability. S. Zuboff referred to these phenomena as surveillance capitalism and warned that they have the power to know and even shape human behavior toward others' ends. In this respect, user data from neural devices, especially when paired with big data and artificial intelligence, would become a more attractive commodity in the data market.

Recently, the Korean government has also increased investment to support the creation of big data infrastructure. Korean policy efforts include privacy law reform which aims to meet the needs of big data research, as well as industry, while protecting individual privacy. Nevertheless, the collection and use of neural data may outpace legislative innovation in the near future, now that the convergence of neuroscience and information technology has the potential to generate more dynamic real-world data which are hard to match specific legal domains in a timely manner.

Before the 20th century, the notion of personality rights, the idea that humans can be the subject and object of rights at the same time, was regarded as a contradictory and inhumane concept. However, legal systems have been adapting to social changes that stem from technical changes. For instance, the misuse of cameras by yellow journalism of the 1890's led to the recognition of the right to privacy. Currently, even a person's image, reputation, and name, which are specific elements or markers of personality, are considered as objects of legal rights. In this perspective, Prof. Suk devised the notion of 뇌신경권, a compound of brain-neuron and rights in Korean, a term which denotes a comprehensive legal status related to neuronal activities from raw data itself to inferential derivatives.

The right to private life is stipulated in Article 17 of the Korean Constitution. According to case law, though the right to self-determination of personal information has no explicit provision, it is derived from the personality rights in Article 10 and confidentiality and freedom of private life in Article 17. Many issues regarding neuro-privacy and neuro-rights seem to overlap with each other. However, they are distinguishable because the right to privacy is closer to being a defensive right against intrusions from outside rather than a comprehensive, proactive right. Therefore, we would like to discuss how neuro-rights could fill the gap in privacy laws per the Korean legal system.

References:

  • Shoshanna Zuboff, The Age of Surveillance Capitalism – The Fight for a Human Future at the New Frontier of Power, PublicAffairs, 2019.
  • Dara Hallinan, Philip Schütz, Michael Friedewald, et al., Neurodata and Neuroprivacy: Data Protection Outdated?, 12 Surveillance & Society 55, 2014.
  • Francis X. Shen, Neuroscience, Mental Privacy, and the Law, 36 Harv. J.L. & Pub. Pol'y 653, 2013.
  • Marcello Ienca & Roberto Andorno, Towards New Human Rights in the Age of Neuroscience and Neurotechnology, 13 Life Sciences, Society and Policy 1, 2017.
  • Sjors Ligthart, Thomas Douglas & Christoph Bublitz, et al., Forensic Brain-Reading and Mental Privacy in European Human Rights Law: Foundations and Challenges, 2020 Neuroethics 1, 10 (2020).

Disclosure: None

 

Abstract 51  /  Presentation

Neurolaw & critical forensic science scholarship: a call for focused integration

Roland Nadler (1) & Emma Cunliffe (1)   / Contact: [email protected]
1. Peter A. Allard School of Law, University of British Columbia, Canada

Neuroethics and neurolaw will increasingly confront forensic or evidentiary uses of brain data in concrete, non-speculative applications. Indeed, psychiatric assessment techniques are already in widespread use for a vast array of forensic purposes, (1) and there is no apparent reason to exclude such methods from the ambit of law and neuroscience. Multi-voxel pattern analysis, an algorithm-intensive method with notional forensic applications for neuroimaging-based memory detection, is progressing toward the point of a plausible (if yet uncertain, and arguably ill-advised) case for admissibility under current Anglo-American evidentiary standards. (2)

A well-developed legal literature on the problematic dynamics of forensic science already exists and has furnished valuable insights. For many forensic techniques, including those routinely admitted in legal proceedings, evidence-based methods and validation studies are known to be insufficient or absent. (3) The prosecutorial State's deployment of scientific and other expert knowledge enjoys undue structural advantages in the criminal process. (4) The disadvantages faced by impoverished, racialized, and otherwise marginalized defendants further compound the likelihood that forensic failures will impact those defendants. (5) However, work of this sort is seldom cited in neurolaw; conversely, critical forensic science scholarship rarely looks forward to potential neuroscientific developments. This is doubly unfortunate: the rhetorical power and sprawling potential relevance of brain claims in criminal and civil proceedings mean that the stakes are especially high precisely where these literatures would intersect.

A future marred by neuro-forensic miscarriages of justice is preventable, and we perceive an opportunity to better integrate existing discourses in pursuit of that goal. Our research aims to develop a detailed account of applicable lessons from critical forensic science scholarship geared specifically toward current and upcoming manifestations of courtroom neuroscience. Because we believe neurolaw has good reason to lend its interdisciplinary voice to calls for doctrinal and institutional reforms of forensic practice, we encourage those writing in the field to join this effort. Such reforms might include the establishment or strengthening of dedicated forensic science regulatory bodies, an asymmetric admissibility standard in criminal proceedings setting a higher bar for State-proffered inculpatory expert evidence, or even targeted bans on uses of neuro-forensic methods to the extent those uses pose concerns familiar from the context of the widely disallowed practice of polygraphy.

References:

  1. Tess M S Neal et al, “Psychological Assessments in Legal Contexts: Are Courts Keeping ‘Junk Science’ Out of the Courtroom?” (2020) 20:3 Psychological Science Public Interest 135
  2. Emily R D Murphy & Jesse Rissman, “Evidence of Memory from Brain Data” (2020) 7:1 JL & Biosciences 1
  3. Tony Ward et al, “Forensic Science, Reliability and Scientific Validity: Advice from America” (2017) 5 Crim L Rev 357
  4. Gary Edmond & Mehera San Roque, “The Cool Crucible: Forensic Science and the Frailty of the Criminal Trial” (2012) 24:1 Current Issues Crim Justice 51
  5. Emma Cunliffe, “Charter Rights, State Expertise: Testing State Claims to Expert Knowledge” (2020) 94 SCLR 2d 367

Disclosure: None

 

Abstract 52  /  Presentation

Cognitive capacity and the right to die: Legal and ethical considerations of medical-aid-in-dying in North America

Michael J. Menconi Jr.[1], Veljko Dubljevic [2]   / Contact: [email protected]
1. Columbia University, 2. North Carolina State University

Background: Medical autonomy remains the cornerstone of the practitioner-patient relationship. Contemporary jurisprudence emphasizes informed consent as the paradigmatic duty owed to patients by their medical providers.[1] Recently, however, this notion of patient autonomy has increasingly included the right to die.[2] The right to dictate the circumstances, timing, and manner of one's death has been codified via statutory law in both the U.S. and Canada.[3]

Methods: We comparatively analyzed the relevant jurisprudence in US and Canada. Both countries share similar styles of democratic governance and common law system. In both jurisdictions, opponents and proponents of medical aid-in-dying (MAID) have seized on disparate, and often inconsistent, medicolegal conceptions of cognitive capacity to either expand or constrict patient access to MAID.[4] Consequently, current MAID laws, practice, and implementation provide a unique insight into the confluence of the legal notion of competence (invoked in courts and legal documents) and the clinical and/or medical notion of cognitive capacity.

Results: The statutory language of MAID laws represents both a social and political commentary on the role of cognitive capacity in medical decision-making. In the U.S., public concerns that cognitive capacity may be insufficiently evaluated in the context of MAID has resulted in statutory requirements that require two distinct patient-initiated MAID requests over a period of 14 days, to ensure sufficient reflection. Similar concerns also led to the requirement that two separate cognitive capacity assessments of the MAID-requesting patient be conducted by different physicians. However, Canada has forgone many of these capacity-related requirements and has unilaterally empowered Nurse Practitioners to conduct MAID capacity assessments. Canada also requires a capacity assessment prior to MAID provision. However, Canada has simultaneously addressed the ethically questionable requirement of prolonging the decision-making process for suffering patients at the end of life by streamlining the capacity assessment process. This reduces both temporal and resource barriers to MAID provision and enhances patient autonomy.[5] Such comparative analyses of statutory law, along with contemporary trends in the legal delegation of healthcare decision-making via advance directives, reveal the extensive medicolegal complexities of assessing cognitive capacity in the context of MAID.

Conclusions: In U.S. and Canada, legal directives will increasingly govern when capacity assessments are warranted and required without regard to the clinical appropriateness of such assessments in the context of MAID. This reality has both ethical and legal implications for the future of cognitive capacity assessments with respect to MAID, and clinical and legal settings more broadly.

References:

  1. Appelbaum, P. S. (2007). Assessment of Patients’ Competence to Consent to Treatment. N Engl j Med, 7.
  2. Thaddeus Mason Pope, "Legal History of Medical Aid in Dying: Physician Assisted Death in U.S. Courts and Legislatures," New Mexico Law Review 48, no. 2 (2018): 267-301.
  3. Orentlicher, David, Thaddeus Mason Pope, and Ben A. Rich. 2014. “The Changing Legal Climate for Physician Aid in Dying.” JAMA 311 (19): 1961.
  4. Orentlicher, David, Thaddeus Mason Pope, Ben A. Rich, and Physician Aid-in-Dying Clinical Criteria Committee. 2016. “Clinical Criteria for Physician Aid in Dying.” Journal of Palliative Medicine 19 (3): 259–62.
  5. Buchbinder, M. (2018). Access to Aid-in-Dying in the United States: Shifting the Debate from Rights to Justice. American Journal of Public Health, 108(6), 754–759.

Disclosure: None

 

Theoretical

Abstract 53  /  Presentation

A conceptual framework for discussing a consensus definition of the neuroright to free will

José M. Muñoz (1-3)   / Contact: [email protected]
1. Mind-Brain Group, Institute for Culture and Society, University of Navarra, Spain; 2. Tatiana Foundation International Center for Neuroscience and Ethics (CINET), Spain; 3. Asociación Mexicana de Neuroética (AMNE), Mexico

Neurorights proposals have recently succeeded at the national level in Chile, through constitutional reform, and in Spain, through the Digital Rights Charter. An ad hoc UN expert commission has also been proposed to work "to develop an international consensus definition of neuro-rights" (Yuste et al., 2021, p. 162). My proposal to seek a minimal definition of the neuroright to free will (FW) aligns with this approach (Muñoz, 2019), and I present here five challenges (C) and corresponding lines of action (A) as an initial attempt to establish a conceptual discussion framework for this definition:

(1) Philosophical multidimensionality. C: There is a wide range of answers to the philosophical problem of compatibility between determinism and FW (e.g., hard determinism, libertarianism, compatibilism, hard incompatibilism). A: Explore whether a minimal conception can be found in which all these approaches converge or, alternatively, whether it is convenient to choose only one to develop the definition.

(2) Ultimate control. C: The Columbia NeuroRights Initiative's proposal for FW states that "Individuals should have ultimate control over their own decision making, without unknown manipulation from external neurotechnologies" (see https://nri.ntc.columbia.edu). While libertarians see ultimate control as an essential requirement for FW, this is criticized from other positions (e.g., compatibilism). A: Elaborate on whether including ultimate control means aligning with libertarianism or, alternatively, seek a definition that dispenses with this concept.

(3) Cultural contextualization. C: Some studies show that Western societies give higher priority to FW as a value than do Eastern ones (e.g., Chernyak et al., 2019). A: Study whether and how a normative formalization of FW as a universal right/value can encompass its diverse cultural conceptions.

(4) Regulatory fitting. C: The Universal Declaration of Human Rights seems to contemplate FW in some contexts, such as Articles 16.2 (free marriage), 18 (free thought), and 21.3 (free voting). A: Determine how implementing FW as a neuroright can effectively expand the current protections while avoiding overregulation.

(5) Cognitive liberty. C: While FW entails an ontological conception of personal autonomy, the neuroright to cognitive liberty—proposed by Ienca and Andorno (2017) and defined as "the right to alter one's mental states with the help of neurotools as well as to refuse to do so" (Bublitz, 2013, p. 234)—refers to specific practical choices. A: Explore conceptual links between the rights of FW and cognitive liberty, analyzing whether they are mutually exclusive, complementary, or interdependent.

References:

  • Bublitz, J-C. (2013). My mind is mine!? Cognitive liberty as a legal concept. In E. Hildt & A. G. Franke (Eds.), Cognitive enhancement (pp. 233–264). Springer. https://doi.org/10.1007/978-94-007-6253-4_19
  • Chernyak, N., Kang, C., & Kushnir, T. (2019). The cultural roots of free will beliefs: How Singaporean and U.S. children judge and explain possibilities for action in interpersonal contexts. Developmental Psychology, 55(4), 866–876. https://doi.org/10.1037/dev0000670
  • Ienca, M., & Andorno, R. (2017). Towards new human rights in the age of neuroscience and neurotechnology. Life Sciences, Society and Policy, 13, Article 5. https://doi.org/10.1186/s40504-017-0050-1
  • Muñoz, J. M. (2019). Chile—Right to free will needs definition. Nature, 574(7780), 634. https://doi.org/10.1038/d41586-019-03295-9
  • Yuste, R., Genser, J., & Herrmann, S. (2021). It’s time for neuro-rights. Horizons, (18), 154¬¬–164. https://www.cirsd.org/en/horizons/horizons-winter-2021-issue-no-18/its-time-for-neuro--rights

Disclosure: None

 

Abstract 54  /  Presentation  /  TOP ABSTRACT (AJOB NEUROSCIENCE)

AJOB Neuroscience cover title

Top Abstract

Cognitive Complexity and Assessments of Capacity in Dementia

George Mellgard (1); Nada Gligorov (2)   / Contact: [email protected]
1. Icahn School of Medicine at Mount Sinai; 2. Alden March Bioethics Institute at Albany Medical College;

Between 2015 and 2055 the population over 65 in the United States is predicted to increase by 80% (1). Although the incidence of dementia has decreased over the last 25 years, decreased mortality has resulted in an overall increased prevalence of dementia. Currently, 50 million people live with dementia globally and this number is expected to increase to 152 million by 2050 (2). Moreover, a diagnosis of dementia has been shown to increase risks of all-cause admission among adults 65 years and older (3). The increased prevalence of and risk for hospitalization associated with dementia significantly increases the likelihood of impaired clinical decision-making capacity among hospitalized patients. Independent of severity of disease, dementia has been to shown to limit capacity in 54% of patients (4).

Although there are a variety of different ways to characterize decisional capacity, in the US, the dominant view of decisional capacity is that it requires the ability to (1) communicate a choice, (2) understand relevant information, (3) appreciate the clinical situation and its consequences, and (4) reason about treatment options (4). In addition to these four criteria, clinicians may use their discretion in applying a sliding scale of capacity. The sliding scale enables clinicians to use a higher threshold of capacity for decisions that are more severe or complex.

In this presentation, we point out deficiencies in the current characterizations of the sliding scale of capacity. We argue that the sliding scale of capacity should not pair severity of the decision with its complexity as decisions that are severe in their consequences need not be complex, and vice versa. In addition, we maintain that the severity of a decision should not change the threshold for capacity judgments. We propose instead that accuracy of capacity assessments will improve if the threshold for capacity is adjusted based solely on the cognitive complexity of the decision. We propose a definition of complexity in decision making based on each patient's particular cognitive deficits. To properly characterize complexity for patients with amnestic dementia, we utilize current research on the types of deficits that characterize it and examine which types of medical decisions might be most complex for patients with this subtype of dementia.

References:

  1. Favreault, M.M., H. Gleckman, and R.W. Johnson, Financing long-term services and supports: Options reflect trade-offs for older Americans and federal spending. Health Affairs, 2015. 34(12): p. 2181-2191.
  2. Christina, P., World Alzheimer’s report 2018. Alzheimer’s disease internations: world alzheimer report, 2018. 2018: p. 1-48.
  3. Phelan, E.A., et al., Association of incident dementia with hospitalizations. Jama, 2012. 307(2): p. 165-172.
  4. Sessums, L.L., H. Zembrzuska, and J.L. Jackson, Does this patient have medical decision-making capacity? Jama, 2011. 306(4): p. 420-427.

Disclosure: None

 

Abstract 55  /  Presentation  /  TOP ABSTRACT (AJOB NEUROSCIENCE)

AJOB Neuroscience cover title

Top Abstract

Inclusive neuroinnovation: setting the challenge for diversity and representation

John Noel Viana   / Contact: [email protected]
1. Australian National Centre for the Public Awareness of Science, ANU College of Science, The Australian National University, Canberra, Australia; 2. Responsible Innovation Future Science Platform, Commonwealth Scientific and Industrial Research Organisation, Brisbane, Australia

With persisting ethnoracial disparities in medical knowledge and health outcomes, there are numerous calls for greater diversity in medical research (Akinhanmi et al. 2018; Chin, Negash, and Hamilton 2011). However, how greater inclusivity, diversity, and representation can be realistically achieved remains a fundamental challenge, against a backdrop of structural racism and mistrust in medical research institutions. This presentation reflects on opportunities and challenges for increasing diversity in three types of innovative neurotechnologies and neuroscientific research – digital mental health, stem cells, and brain stimulation. Drawing from responsible innovation (Silva et al. 2020; Stilgoe, Owen, and Macnaghten 2013) and vulnerability (Bracken-Roche et al. 2017) frameworks, this presentation will unpack what it means and what is needed to promote inclusivity in different types of neuroscientific research, increasing minority representation in neurostimulation clinical trials, biospecimen sources for cell culture, and training samples for machine learning algorithms. In what ways can ethnoracial minorities be involved in these studies and during what stages in the innovation process? What brain and mental health issues should be primarily addressed by these technologies, and what voice will and should ethnic minorities have in defining research priorities and shaping research trajectories? How can we reconcile between protecting "vulnerable" research participants and involving them in research that can address their underlying vulnerabilities? Fundamental differences in the three technologies will also be highlighted using examples from recent publications, and the impact of these differences on inclusive neuroinnovation will be explored. Finally, this presentation will propose empirical research methodologies for understanding opportunities and obstacles for inclusive neuroinnovation, accounting for variability in research concepts, cultures, and contexts and their impact on moving calls for diversity and representation from an overarching recommendation to a concrete action.

References:

  • Akinhanmi, M. O., J. M. Biernacka, S. M. Strakowski, S. L. McElroy, J. E. Balls Berry, K. R. Merikangas, S. Assari, M. G. McInnis, T. G. Schulze, M. LeBoyer, C. Tamminga, C. Patten, and M. A. Frye. 2018. "Racial disparities in bipolar disorder treatment and research: a call to action." Bipolar Disord 20 (6): 506-514. https://doi.org/10.1111/bdi.12638.
  • Bracken-Roche, Dearbhail, Emily Bell, Mary Ellen Macdonald, and Eric Racine. 2017. "The concept of ‘vulnerability’ in research ethics: an in-depth analysis of policies and guidelines." Health Research Policy and Systems 15 (1): 8. https://doi.org/10.1186/s12961-016-0164-6. https://doi.org/10.1186/s12961-016-0164-6.
  • Chin, A. L., S. Negash, and R. Hamilton. 2011. "Diversity and disparity in dementia: the impact of ethnoracial differences in Alzheimer disease." Alzheimer Dis Assoc Disord 25 (3): 187-95. https://doi.org/10.1097/WAD.0b013e318211c6c9.
  • Silva, Hudson P., Andrée-Anne Lefebvre, Robson R. Oliveira, and Pascale Lehoux. 2020. "Fostering Responsible Innovation in Health: An Evidence-Informed Assessment Tool for Innovation Stakeholders." International Journal of Health Policy and Management: -. https://doi.org/10.34172/ijhpm.2020.34.
  • Stilgoe, Jack, Richard Owen, and Phil Macnaghten. 2013. "Developing a framework for responsible innovation." Research Policy 42 (9): 1568-1580. https://doi.org/https://doi.org/10.1016/j.respol.2013.05.008.

Disclosure: None

 

Abstract 56  /  Presentation  /  TOP ABSTRACT (AJOB NEUROSCIENCE)

AJOB Neuroscience cover title

Top Abstract

From Genomes to Brainomes: What Shouldn’t Insurance Companies Know?

Jonathan Pugh   / Contact: [email protected]
1. The Oxford Uehiro Centre for Practical Ethics, University of Oxford; 2. Reuben College, The University of Oxford

The increasing use of neuro-technologies is raising ethical concerns about the various ways in which data generated by these technologies could potentially be exploited. One frequently voiced concern is that such ‘neurodata' could be obtained by insurance companies, and used to determine an individual's ability to access insurance. Comparable concerns have previously been raised against the use of genetic test results in insurance, with critics claiming that the use of such results by insurance companies would undermine social justice, and a putative right to genetic privacy. However, whilst some jurisdictions have passed legislation to prohibit the use of genetic test results in insurance risk pooling, others (including the UK) still permit the limited use of such results for this purpose. One justification offered for this practice is that prohibiting the use of genetic test results could lead to a significant information asymmetry between consumers and insurance companies. In turn, this could potentially lead to widespread adverse selection that might threaten the viability of the insurance market. In this talk, I will consider whether we should prohibit the use of ‘neurodata' in insurance risk pooling, drawing out lessons that may be drawn in this context from the ethical debate surrounding the use of genetic test results for a similar purpose. In particular, I shall consider the extent to which neurodata represents a source of information that might lead to adverse selection, and whether considerations of social justice and privacy provide a sufficient basis for prohibiting the use of neurodata for insurance risk pooling.

References:

  • Jonathan Pugh, ‘Genetic Information, Insurance and a Pluralistic Approach to Justice’, Journal of Medical Ethics 47, no. 7 (1 July 2021): 473–79, https://doi.org/10.1136/medethics-2020-106913.
  • Eli Feiring, ‘Reassessing Insurers’ Access to Genetic Information: Genetic Privacy, Ignorance, and Injustice’, June 2009, 300–310.
  • Marcello Ienca and Roberto Andorno, ‘Towards New Human Rights in the Age of Neuroscience and Neurotechnology’, 26 April 2017, 5.

Disclosure: Jonathan Pugh is currently employed on the UKRI/ AHRC funded UK Ethics Accelerator project, grant number AH/V013947/1.’

 

Abstract 57  /  Presentation  /  TOP ABSTRACT (AJOB NEUROSCIENCE)

AJOB Neuroscience cover title

Top Abstract

The elephant in the room is sometimes a monkey: Human exceptionalism and anthropocentrism in neuroethics

1. L. Syd M Johnson   / Contact: [email protected]
1. Upstate Medical University

Neuroethics has long considered entities and organisms other than fully developed humans to be within its purview. Entities like robots and AIs with nonbiological "brains" are recognized to be within the sphere of neuroethical concern (1). Similarly, much ink has been spilled on human-origin entities and organisms like cerebral organoids, cultured neural tissues and neural cells, and human embryonic stem cells. The near exclusion of nonhuman animals (with the exception of human-nonhuman chimeras) from neuroethical consideration is notable and worthy of scrutiny (2).

Maintaining a rigid moral partition between humans and nonhuman animals requires ignoring the accumulated knowledge and discoveries of the brain sciences, and numerous cognate fields, as well as humanistic disciplines including philosophy and human-animal studies (3). Despite the multidisclipinary nature of neuroethics, it remains for the most part narrowly anthropocentric in its focus. Expanding that focus requires widening the disciplinary boundaries of neuroethics to incorporate more moral perspectives and insights from scholarship in other sciences and disciplines. A neuroethics committed to rigorously examining the implications of neuroscientific research, and interrogating research that threatens justice and other fundamental ethical values cannot maintain a rigid doctrine of human exceptionalism that is in significant tension with scientific reality.

The traditional framing of justice in research as the fair and scientifically justified selection of subjects, and the fair and equitable distribution of the benefits and burdens of research (4, 5) has profound implications for neuroscientific research with nonhuman animals, and especially nonhuman primates who have many capacities and characteristics that make them relevantly similar to humans, and subjects of justice. Unlike conscious robots and AIs, these animals already exist, and are used in neuroscientific research in ways that would be prohibited and almost universally acknowledged to be unethical if they were humans. By adopting a less anthropocentric focus, and a more inclusive ethics, neuroethics can expand its scope and role in critical and forward-thinking discussions of how developing knowledge of nonhuman minds challenges human exceptionalism and anthropocentrism in neuroscience and beyond.

References:

  1. Johnson LSM. Neuroethics of the Nonhuman. AJOB Neuroscience. 2019;10(3):111-3.
  2. Johnson LSM, Fenton A, Shriver A. Neuroethics and Nonhuman Animals. Germany: Springer; 2020 2020.
  3. DeGrazia D. Sentience and Consciousness as Bases for Attributing Interests and Moral Status: Considering the Evidence—and Speculating Slightly Beyond. In: Johnson LSM, Fenton AF, Shriver AS, editors. Neuroethics and Nonhuman Animals. Advances in Neuroethics: Springer; 2020. p. 17-31.
  4. Belmont Commission. The Belmont Report: Ethical Principles and Guidelines for the Protection of Human Subjects of Research. 1979. https://www.hhs.gov/ohrp/regulations-and-policy/belmont-report/index.html
  5. Ferdowsian H, Johnson LSM, Johnson J, Fenton A, Shriver A, Gluck J. A Belmont Report for animals? Cambridge Quarterly of Healthcare Ethics. 2020; 29(1):19-37.

Disclosure: None

 

Abstract 58  /  Presentation  /  TOP ABSTRACT (AJOB NEUROSCIENCE)

AJOB Neuroscience cover title

Top Abstract

The consciousness criterion and the moral status project

L. Syd M Johnson   / Contact: [email protected]
Upstate Medical University

In the philosophical and neuroethical discourses on disorders of consciousness, "moral status," "person," and "human" are not always treated as synonymous. That is, not all humans are thought to be persons. Some humans – such as those with chronic impairments of consciousness – are sometimes thought to have limited moral status and so are not regarded as persons, and thus don't matter as much as persons do. The Consciousness Criterion is the claim that moral status requires consciousness, or that being conscious is a necessary condition for being a person (1). The Consciousness Criterion involves at least one of two types of claims:

1. General Consciousness Criterion: Personhood requires consciousness (2).

2. Particular Consciousness Criterion: Personhood requires a particular type of consciousness (3, 4).

My first aim is to show why consciousness is not a suitable criterion for determining who is and who is not a person with moral status. I am skeptical that there are defensible, necessary, nonmoral criteria for a moral property like "personhood" or "moral status." But assuming there are, they would need to meet a high standard of epistemic certainty given the risks of being wrong. Consciousness would fail to satisfy the demands of epistemic certainty, especially in the hard cases involving disorders of consciousness (5).

My second aim is to interrogate the Moral Status Project, the project of trying to define moral status and who has it. The Project has two aims. One aim is inclusive –to define moral status such that those currently outside the margins can be brought in where they belong. This has been the project of those, for example, who endeavor to demonstrate the moral status of some nonhuman animals. The other aim is exclusive, and seeks to define who belongs outside the margins, including some who are currently inside, or near the margins. This is the aim of many who have concluded that unconscious or minimally conscious humans, or humans with intellectual or cognitive impairments don't qualify for moral status or personhood. One project expands the margins, and one contracts them. It's the latter project that is morally concerning, and a threat to justice. There is grave potential harm in wrongly and unjustly excluding someone. Having made such mistakes many times in human history, we should be very careful to avoid them.

References:

  1. Johnson L. The Ethics of Uncertainty: Entangled Ethical and Epistemic Risks in Disorders of Consciousness. New York: Oxford University Press; 2021.
  2. Warren MA. Moral status: Obligations to persons and other living things. Clarendon Press; 1997.
  3. Levy N, Savulescu J. Moral significance of phenomenal consciousness. Progress in brain research. 2009;177:361-70.
  4. Shepherd J. Consciousness and moral status. New York: Routledge; 2018.
  5. Johnson LSM, Lazaridis C. The Sources of Uncertainty in Disorders of Consciousness. AJOB Neuroscience. 2018;9(2):76-82.

Disclosure: None

 

Abstract 59  /  Presentation  /  TOP ABSTRACT (AJOB NEUROSCIENCE)

AJOB Neuroscience cover title

Top Abstract

Are New Rights the Way to Mental and Brain Privacy?

Daniel Susser and Laura Y. Cabrera   / Contact: [email protected]
The Pennsylvania State University

With the development of novel neurotechnologies comes new forms and greater amounts of data collection. The potential to collect brain data more directly and with higher resolution has heightened worries about mental and brain privacy. Some have argued that the specific kinds of data collection neurotechnologies enable raise unique and unprecedented privacy challenges, because information about the brain is particularly revealing, it is less subject to conscious control, and there is unusual uncertainty about what can be inferred from it (Ienca and Andorno, 2017; Goering et al. 2021). In order to manage the risks to individuals posed by these data flows, some have suggested that it is necessary to codify new privacy rights, including a right to so-called "mental privacy."(Ienca and Andorno, 2017) In this paper, we consider these arguments and conclude that while neurotechnologies do raise significant privacy concerns, such concerns are—at least for now—no different from those raised by other well-understood data collection technologies, such as gene sequencing tools and online surveillance. To better understand the privacy stakes of brain data, we suggest the use of a conceptual framework from information ethics: Helen Nissenbaum's "contextual integrity" theory (2010). According to that framework, privacy norms are inherently context-specific, and understanding the privacy implications of new data-driven technologies requires analyzing them in each particular social context. To better illustrate the importance of context, we examine neurotechnologies and the information flows they produce in three contexts familiar from prior discussions—healthcare and medical research, criminal justice, and consumer marketing. In each case, we find that existing approaches to information privacy are adequate for theorizing the privacy implications of neurotechnologies and addressing to a larger extent the main worries raised by proponents of new mental privacy rights. This raises questions about the need for new approaches and new rights focused on mental privacy. Indeed, we argue that emphasizing what is distinct about brain privacy issues, rather than what they share in common with other data privacy concerns, risks weakening broader efforts to enact more robust privacy law and policy. Thus, ironically, insisting on special mental and brain privacy rights might inadvertently do more harm than good in the fight for privacy in the face of new data-driven technologies.

References:

  • Goering, S., Klein, E., Sullivan, L. S., Wexler, A., Arcas, B. A. Y., Bi, G.-Q., et al. (2021). Recommendations for Responsible Development and Application of Neurotechnologies, Neuroethics [online]. http://doi.org/10.1007/s12152-021-09468-6
  • Ienca, M., & Andorno, R. (2017). Towards new human rights in the age of neuroscience and neurotechnology. Life Sciences, Society and Policy, 13(1), 1–27. http://doi.org/10.1186/s40504-017-0050-1
  • Nissenbaum, H. Privacy in Context: Technology, Policy and the Integrity of Social Life (Palo Alto: Stanford University Press, 2010)

Disclosure: None

 

Abstract 60  /  Presentation

Neuroethics of Lumbar Punctures (aka Spinal Taps) for Psychiatric Indications

Matthew L. Baum1,2, Emma-Louise Aveling3   / Contact: [email protected]
1. Brigham and Women’s Hospital, Department of Psychiatry; 2. Harvard Medical School; 3. Harvard T.H. Chan School of Public Health

Rarely, patients with new-onset serious psychiatric symptoms have neuro-inflammatory processes (e.g. Endres, 2015) that conventional psychiatric workup may miss. Though markers of neuro-inflammation are apparent in cerebrospinal fluid (CSF), and key biomarkers are sometimes detectable only in CSF, few psychiatric workups include a lumbar puncture (LP, aka spinal tap) to collect CSF. LP is not a conventional tool in psychiatric practice and many psychiatrists may never have performed one. The consequences of delayed diagnosis are serious: patients with auto-immune etiologies are prone to adverse reactions to conventional anti-psychotic medications (Lejuste, 2016), and outcomes worsen with delayed immunotherapy (Guasp, 2021). Some experts have argued that LPs should be part of the routine diagnostic work-up for certain recent onset psychiatric symptoms (Pollak, 2018; Guasp, 2021). Yet only a handful of hospitals worldwide have adopted this practice (e.g. Endres, 2015). Even in the research literature of inflammatory neuropsychiatric disease, where one would expect best practices, less than 1% of psychiatry patients had CSF samples (Guasp, 2021).

How concerned should we be about this disconnect between expert recommendation and practice? Are psychiatric practitioners appropriately cautious to incorporate LP, or is LP's continued rarity in psychiatry a failure of mental healthcare parity? Current literature, e.g. Pollak (2018), does a good job of stating the quantitative prevalence of a CSF finding, but it is often unclear how the authors get from that number to their recommendation for or against LP. As a result, clinicians lack the benchmarks to interpret whether a certain prevalence is high enough or is too low to justify routine LPs in psychiatric populations.

We use a practical ethics approach to generate these missing benchmarks by examining relevantly similar cases in neurology and pediatrics where LP has been judged to be justified e.g., LP is routinely done in pediatric hospitals for all neonates with fever to detect the small sub-population with meningitis. We consider not only clinical features of risk/benefit (disease prevalence, importance of early detection, ease of treatment, practical challenges, etc.) but also morally relevant features of diseases, such as whether capacity is impaired. Following a principle of psychiatric healthcare parity, we identify given psychiatric indications that meet/fail to meet that benchmark, thus prima facie, that would/would not merit routine LP. We then examine morally relevant differences in psychiatric indications that could appropriately modify the prima facie judgments, including health disparities and prioritarian principles of distributive justice (Baum 2016).

References:

  • Baum, M. L. (2016). The Neuroethics of Biomarkers: What the Development of Bioprediction Means for Moral Responsibility, Justice, and the Nature of Mental Disorder. Oxford. Oxford University Press.
  • Endres, D, Perlov, E, Baumgartner, A, Hottenrott, T, Dersch, R, Stich, O, et al. (2015) Immunological findings in psychotic syndromes: a tertiary care hospital's CSF sample of 180 patients. Front Hum Neurosci 9: 476
  • Guasp M, Gine-Serven, E, Maudes E, et al. (2021) Clinical, Neuroimmunologic, and CSF Investigations in First Episode Psychosis. Neurology May 2021, [DOI: 10.1212/WNL.0000000000012191]
  • Lejuste F, Thomas L, Picard G, et al. (2016) Neuroleptic intolerance in patients with anti-NMDAR encephalitis. Neurol Neuroimmunol Neuroinflamm. 3(5):e280. Published 2016 Aug 29. [DOI:10.1212/NXI.0000000000000280]
  • Pollak, K, and B Lennox (2018) Time for a change of practice: the real-world value of testing for neuronal autoantibodies in acute first-episode psychosis. BJPsych Open , Volume 4 , Issue 4 , July 2018 , pp. 262 – 264 [DOI: https://doi.org/10.1192/bjo.2018.27]

Disclosure: MLB discloses a relationship with Oxford University Press, for which he receives royalties for the sale a book conceptually related to content of this abstract, “The Neuorethics of Biomarkers”. EA has no financial disclosures.

 

Abstract 61  /  Presentation

Memory modification and authenticity: a narrative approach

Muriel Leuenberger   / Contact: [email protected]
University of Oxford

The potential of memory modification techniques (MMTs) raised concerns and sparked a debate in neuroethics. One of the issues commonly raised is that memory modification may impact identity and authenticity (Zawadzki and Adamczyk 2021; Erler 2011; Parens 2010; Wasserman 2004; Liao and Sandberg 2008). Can I be authentic if I erase uncomfortable memories of my past? What if I only lower their emotional impact? In this paper, I address these questions based on a narrative account of authenticity and through a systematic analysis of how MMTs could look like. I proceed by drawing two distinctions within the received views on authenticity: self-creation, self-definition and dual-basis views and process and conservation views. Based on these distinctions, I argue that a dual-basis, process view of authenticity is most plausible and that the influence of MMTs on authenticity crucially depends on the specifics of the MMT. It is currently still unclear how a potential MMT may look like and how individuals would experience their memory after modification. This lack of information about the specifics of memory modification has not been sufficiently acknowledged in the ethical debate so far. Therefore, I continue with a systematic analysis of possible properties of MMTs in which I distinguish between the dimensions of memories that can be modified (the factual content, the sensory-like experience, and the autonoetic consciousness), the kinds of memories (e.g., self-defining or trivial memories, the memory of using an MMT), and the properties of the process of memory modification (e.g., preventive use, instant or gradual effects). The impact of MMTs on authenticity is analyzed regarding the possible properties of MMTs and based on a narrative approach to authenticity which fulfills the requirements of a dual-basis, process view of authenticity. Some kinds of MMTs are much less threatening to authenticity than others. Particularly concerning cases are erasing or editing the factual content of memories, notably if they carry explanatory weight in relation to narrative identity. Lastly, I explore the potential of MMTs to shift the balance between self-discovery and self-creation within authenticity and thereby alter the concept itself.

References:

  • Erler, Alexandre. 2011. "Does Memory Modification Threaten Authenticity?" Neuroethics 4 (3): 234-49.
  • Liao, S. Matthew, and Anders Sandberg. 2008. "The Normativity of Memory Modification." Neuroethics 1 (2): 85-99.
  • Parens, Erik. 2010. "The Ethics of Memory Blunting: Some Initial Thoughts." Frontiers in behavioral neuroscience 4: 190.
  • Wasserman, David. 2004. "Making Memory Lose Its Sting." Philosophy & Public Policy Quarterly 24 (4): 12-18.
  • Zawadzki, Przemyslaw, and Agnieszka K. Adamczyk. 2021. "Personality and authenticity in light of the memory-modifying potential of optogenetics." American Journal of Bioethics - Neuroscience 12 (1): 3-21.

Disclosure: None

 

Abstract 62  /  Presentation

A study on the application of moral enhancement to moral education in Korea

Seungmin Nam1, Kyounggeun Lee2   / Contact: [email protected]
1. Department of Medicine, Hanyang University, 2. Department of Ethical Education, Seoul National University

This study examines the areas in which neuroscience could be applied to Korean moral education, and proposes possible ways of applying it. Currently, moral education in Korea is mainly based on cognitive approaches to cultivate moral humans and just citizens, which are the aims of moral education. Neuroscience has revealed, however, that emotions and intuitions are strongly related to moral judgments and conducts. Accordingly, some Korean researchers accept these findings, while others show worries of turning moral education into mere physical manipulations in the context of scientific reductionism. Therefore, this study introduces the concept of 'moral enhancement', a neuroscientific approach to moral education, and examines the applicability of this concept to Korean moral education. The discussion proceeds in the following order. First, we introduce the concept of moral enhancement. Second, the areas to where moral enhancement can be applied are subdivided and presented. Moral enhancement can be applied to three main areas: i) general education, ii) special education, and iii) medical treatment. In the area of medical treatment, however, the moral enhancement is limited only for patients morally or psychologically disabled, so that it's unable to extend to general education. Therefore, thirdly, we suggest another way in which moral enhancement can be applied to the area of general education. Mere physical manipulations such as in/activation of certain hormones or brain-parts are not suitable for moral education in Korea, because its educational philosophy indicates Constructivism, focusing on interactions between instructors and learners to develop student's morality. Thus, we insist on the necessity of developing and applying teaching methods such as role-playing, simulation that affect the development of emotions and intuitions in other ways. Finally, considering the area of special education, we propose the necessity for a new direction of moral education based on moral enhancement. Specifically, we argue that the students for special education in Korea are also in need of moral education. Since they are selected by the Act on Special Education for Persons with Disabilities. etc, not (in principle) by the Enforcement Rule of the Act on Welfare of Persons with Disabilities, it's arguable that students classified as being ‘handicapped' or ‘at risk', not as ‘impaired' or ‘disabled', are particularly exposed to the marginalization from both areas of medical treatment and general education. Therefore, we suggest that it's necessary to develop a new separated moral educational method which could be run parallel with medical treatment using physical manipulation.

References:

None

Disclosure: None

 

Abstract 63  /  Presentation  /  TOP ABSTRACT (AJOB NEUROSCIENCE)

AJOB Neuroscience cover title

Top Abstract

A feminist standpoint for cognitive neuroscience

Vanessa A. Bentley   / Contact: [email protected], @pirateV
University of Central Oklahoma

As sex differences research proliferates (Maney 2016), two "sides" face off: traditional (non-feminist) scientists and feminist scientists and science studies scholars. Feminist approaches are developing beyond merely criticizing traditional science to develop methodological and theoretical resources to support feminist science. Furthering the feminist project, I connect the theoretical resources from feminist standpoint theory to the practices of science in cognitive neuroscience, specifically the neuroimaging of sex/gender differences, to develop a feminist standpoint framework for cognitive neuroscience.

Standard practice in the neuroimaging of sex/gender differences is characterized by sex essentialism, which is the view that males and females have different physical, psychological, and emotional characteristics due to biological sex. Instead, I propose a feminist standpoint framework. Using Intemann's (2010) three theses of feminist standpoint epistemology -- the situated knowledge thesis, the epistemic advantage thesis, and the methodological thesis – I articulate what it would mean to do science from the lives of oppressed, subordinate, marginalized, or neglected, which, for the case of sex/gender differences, is individuals who identify as ciswomen, transgender, nonbinary, gender-fluid, intersex, or who have sexual orientations that deviate from the heterosexual norm. Once we initiate inquiry from the perspective of nondominant lives, we can reflect on the differences between the lived experiences of individuals from the dominant group as compared to those from nondominant groups and incorporate the interests of nondominant groups in the research.

For example, incorporating the interests of non-dominant perspectives involves, for ciswomen, an interest in overcoming sex-based stereotypes, and for intersex, nonbinary, and transgender individuals, an interest to be included in research rather than rendered invisible by the binary definition of sex/gender or pathologized as "abnormal." As for reflecting on the differences between the lived experiences of individuals from the dominant group as compared to those from nondominant groups, confounding factors or alternative explanations can be revealed that illuminate the phenomena under investigation. For example, do non-cismen have the same experience as cismen within the testing environment? What about activities – sports, hobbies, extracurriculars – and school classes? Do ciswomen, cismen, and individuals who are transgender, nonbinary, gender-fluid, intersex, and non-heterosexual all have the same access to and encouragement in activities and classes where one learns masculine-coded skills, such as math or visuospatial skills?

Thus, the feminist standpoint can be a valuable tool to redirect research on the neuroscience of sex/gender to provide less partial and distorted knowledge and knowledge that is liberatory rather than oppressive.

References:

  • Maney, Donna. 2016. “Perils and Pitfalls of Reporting Sex Differences. Philosophical Transactions of the Royal Society B 371: 20150119.
  • Intemann, Kristen. 2010. “Feminist Standpoint Empiricism: Rethinking the Terrain in Feminist Philosophy of Science.” In New Waves in Philosophy of Science, ed. P.D. Magus and Jacob Busch, 198-225. England: Palgrave Macmillan.

Disclosure: None

 

Abstract 64  /  Presentation

An Ethical Approach to Detecting Covert Consciousness

Michael J. Young, MD, MPhil; Yelena G. Bodien, PhD; Joseph T. Giacino, PhD; Robert D. Truog, MD; Leigh R. Hochberg, MD, PhD; Brian L. Edlow, MD   / Contact: [email protected]
Department of Neurology; Massachusetts General Hospital; Harvard Medical School

Shortcomings of the bedside behavioral examination in reliably detecting consciousness generate profound dilemmas for clinicians and surrogates facing decisions about continuation of life-sustaining therapy, pain control, prognostication, and resource allocation in patients with disorders of consciousness (DoC). Novel neuroimaging and electrophysiologic techniques that aim to improve diagnostic accuracy for patients with DoC are under investigation, yet little is known about ethical concerns surrounding these tools and the attitudes of clinicians, researchers, patients, and families regarding their appropriate implementation. Responding to the high-priority BRAIN Initiative goal of considering ethical implications of neuroscience research, we identify and evaluate underexplored ethical issues raised by research on next-generation neurotechnologies to detect consciousness in persons with DoC, with the ultimate aim of developing a roadmap for responsible research and translation of advanced neurotechnologies to detect consciousness in settings of diagnostic and prognostic uncertainty.

Here we describe initial results from the first phase of this work, which applies philosophical, historical and normative ethical analysis to identify and critically evaluate ethical implications of emerging neurotechnologies for detecting consciousness in research and clinical settings. We further detail the methodology of the planned second phase of this work, the DECODE study (Data-driven neuroEthics for COnsciousness DEtection), which will apply empirical techniques including qualitative semi-structured interviewing and grounded theory analysis to ascertain key stakeholder perspectives (including those of researchers, patients, surrogates and clinicians) regarding these neurotechnologies, and to identify preferences, expectations and concerns among stakeholders surrounding data-sharing of uncertain diagnostic data generated through investigative neurotechnologies. A thematic network of neuroethical concerns will be developed on the basis of this dataset, and stakeholder perspectives will be mapped and distilled into a guiding framework for responsible development and deployment of advanced neurotechnologies to detect consciousness.

References:

  • Young, M.J. and Edlow, B.L., 2021. The quest for covert consciousness: Bringing neuroethics to the bedside. Neurology, 96(19), pp.893-896.
  • Young, M.J. and Edlow, B.L., 2021. Emerging Consciousness at a Clinical Crossroads. AJOB neuroscience, 12(2-3), pp.148-150.

Disclosure: None

 

Abstract 65  /  Presentation  /  TOP ABSTRACT (AJOB NEUROSCIENCE)

AJOB Neuroscience cover title

Top Abstract

Agency in Augmented Reality: Exploring the Ethics of Facebook’s AI-Powered Predictive Recommendation System

Andreas Schönau   / Contact: [email protected]
1. University of Washington; 2. Center for Neurotechnology;

Developments of technologies mediated by Artificial Intelligence (AI) are increasing and will continue to influence a large number of aspects of our individual lives. One area that will impact our society in the upcoming years is the development of predictive algorithms for personalized recommendations that prioritize ads, filter content, and tailor our decision-making process. A good example of what this future might hold was recently presented by Facebook Reality Labs (FRL) who work on augmented reality (AR) glasses powered by contextually aware AI that allows the user to "communicate, navigate, learn, share, and take action in the world." (FRL 2021). One of the major features of those glasses is "the intelligent click" that presents action prompts to the user based on their personal history and previous choices. The user can accept or decline those suggested action prompts depending on individual preferences. One example used by FRL to illustrate how this technology might work is an action prompt to turn on music when the system detects that the user puts on their running shoes (e.g., "Play running playlist?"). Facebook presents this technology as a gateway to "increased agency".

However, this phrasing is problematic since it presumes a simplistic view of agency according to which our agentive capacities increase parallel to the ease in which our actions are carried out. Relying on such an underdeveloped understanding of agency as the conceptual basis in which predictive algorithms are introduced in future technologies is at risk of removing human responsibility, limiting people's decision-making capacities, and devaluing human skills (Floridi et al. 2018, Dignum 2019). In order to avoid those and other potential pitfalls, technologies and algorithms that structure people's lives need to be based on a deeper understanding of agency.

With the goal of mapping this emerging terrain, the aim of this research project is to offer a thorough analysis of the agency-limiting risks and the agency-enhancing potentials of Facebook's "intelligent click" feature. Based on a concept of agency by Dignum (2019), the three agential dimensions of autonomy (i.e. acting independently), adaptability (i.e. reacting to changes in the environment), and interactivity (i.e. interacting with other agents) will be examined towards our ability to make self-determining choices. Starting this analysis while the technology is in development is crucial for building responsible algorithms that are not threatening but maintaining the user's capacity to engage in meaningful decision-making processes.

References:

  • Dignum, Virginia (2019): Responsible Artificial Intelligence: How to Develop and Use AI in a Responsible Way. Cham: Springer International Publishing.
  • Facebook Reality Labs (2021): Inside Facebook Reality Labs: Wrist-based interaction for the next computing platform. In: [email protected] https://tech.fb.com/inside-facebook-reality-labs-wrist-based-interaction-for-the-next-computing-platform/.
  • Floridi, Luciano/Cowls, Josh/Beltrametti, Monica/Chatila, Raja/Chazerand, Patrice/Dignum, Virginia/Luetge, Christoph/Madelin, Robert/Pagallo, Ugo/Rossi, Francesca/Schafer, Burkhard/Valcke, Peggy/Vayena, Effy (2018): AI4People—An Ethical Framework for a Good AI Society: Opportunities, Risks, Principles, and Recommendations. In: Minds and Machines 28, 689–707.

Disclosure: None

 

Abstract 66  /  Presentation  /  TOP ABSTRACT (AJOB NEUROSCIENCE)

AJOB Neuroscience cover title

Top Abstract

Engagement, Exploitation, and Basic Human Neuroscience Research

Ashley Feinsinger (1), Michelle Pham (2), Nader Pouratian (3)   / Contact: [email protected]
1. Departments of Medicine and Philosophy, University of California, Los Angeles; 2. Center for Medical Ethics and Health Policy, Baylor College of Medicine; 3. Department of Neurosurgery, UT South Western Medical Center;

There is growing recognition of the value of engaging participants in clinical research, evidenced for example, by community-based participatory research paradigms and the impact of engagement on research outcomes (Jagosh et al., 2015). However, little work considers the value of engagement in non-therapeutic basic science research. Indeed, some have expressed hesitation at the very idea of engagement in this research, citing concerns about difficulty and appropriateness (Allard et al., 2018).

When research aims to benefit the participant or the participants' disease group, engagement may help improve knowledge translation, identify better clinical research questions, and provide better treatment options (Carroll et al., 2017). But these motivations do not straightforwardly translate to non-therapeutic research. Such research is not aimed at participants' clinical benefit, either directly or in the long term, and is instead aimed at answering a scientific question. What then, is the value of participant engagement in this space?

Focusing on the case of invasive basic brain research, such as intraoperative electrophysiology studies conducted during DBS surgery, we argue that participant engagement interacts with a central ethical concern of this research: exploitation. The threat of exploitation is particularly serious this research, given that these studies take advantage of a rare clinical opportunity to study the brain, and that study participants may be in a highly vulnerable position (Mergenthaler et al., 2021).

Focusing on the particular context of this research and using Wertheimer's account of exploitation (Wertheimer, 1999), we argue that participant engagement can offer an underexplored and crucial way to better understand and mitigate exploitation concerns. Understanding participant values and incorporating their voices into the research process may help determine (i) whether and to what extent the distribution of risks and benefits are morally problematic, and (ii) work towards designing a brain research paradigm that recognizes and responds to participant voices in meaningful ways. With this, we offer a conceptually grounded motivation for pursuing engagement in basic brain research, that can guide funding agencies and researchers in their efforts to increase diverse perspectives and advocate for patient-participants interests, even in non-therapeutic studies.

References:

  1. Jagosh et al., “A Realist Evaluation of Community-Based Participatory Research: Partnership Synergy, Trust Building and Related Ripple Effects,” BMC Public Health 15 (2015): 725.
  2. Allard, et al. “What does patient engagement mean for Canadian National Transplant Research Program Researchers?”. Res Involv Engagem 4, 13 (2018).
  3. Carroll et al., “Questioning Patient Engagement: Research Scientists’ Perceptions of the Challenges of Patient Engagement in a Cardiovascular Research Network,” Patient Preference Adherence 11 (2017): 1573-1583.
  4. Mergenthaler et al., “A Qualitative Analysis of Ethical Perspectives on Recruitment and Consent for Human Intracranial Electrophysiology Studies,” AJOB Neuroscience 12, no. 1 (2021): 57-67.
  5. Wertheimer, Exploitation, Princeton: Princeton University Press, (1999).

Disclosure: None

 

Abstract 67  /  Presentation

Untangling the Divine: Religious Coping in Psychotic Illness and a Model for Clinical Involvement

Emily Rodriguez   / Contact: [email protected]
Columbia University, New York City

Many of those who are mentally ill have religious faith; what happens when religious faith manifests in their psychopathology in the form of religiously themed delusion or psychosis (symptoms common to illnesses like bipolar disorder and schizophrenia)? On one hand, religion and spirituality play a central role in the spiritual, social, and psychological health of many people. In times of distress, spirituality may be extremely important in one's ability to cope. In the case of religious delusion, however, religiosity, at least on the surface, seems to be part of the problem. Is it helpful or harmful to engage with the delusion itself on a spiritual level as a chaplain, and if not, is it helpful or safe to engage with the religious background of the patient at all?

In addressing this issue, I looked into the clinical experiences and expectations of the patients themselves, the unique overlapping roles between clinicians and chaplains in psychiatric settings, and ethical dimensions regarding the patient's potentially variable autonomy, the religious beliefs of their families, and the need for medical staff to be fully informed of diverse religious and cultural beliefs. I concluded that, despite the fears of clinicians, pastoral and clinical involvement with the patient which allows space for them to voice concerns regarding the validity of their faith and its distinction from delusion is not only overwhelmingly supported by the patients themselves, but results in a positive, constructive clinical outcomes for patients which reduce feelings of isolation and fear while encouraging recovery.

References:

  • Ouwehand, E., Wong, K., Boeije, H., & Braam, A. (2014). Revelation, delusion or disillusion: subjective interpretation of religious and spiritual experiences in bipolar disorder. Mental Health, Religion & Culture, 17(6), 615-628.
  • Mohr, S. (2011). Integration of spirituality and religion in the care of patients with severe mental disorders. Religions, 2(4), 549-565.
  • Huang, C. L. C., Shang, C. Y., Shieh, M. S., Lin, H. N., & Su, J. C. J. (2011). The interactions between religion, religiosity, religious delusion/hallucination, and treatment-seeking behavior among schizophrenic patients in Taiwan. Psychiatry Research, 187(3), 347-353.
  • Fretheim, T. D. (2015). Many Will Come in My Name: Spiritual Care for Persons with a Delusion of Grandiosity with Religious Content. The Covenant Quarterly, 73(3-4), 14-29.
  • Huguelet, P., & Koenig, H. G. (Eds.). (2009). Religion and spirituality in psychiatry. Cambridge University Press.

Disclosure: None

 

Abstract 68  /  Presentation

Intergenerational Social Justice, Neuroscience of Art and Cultural Genomic Identity and the future of International Cultural Heritage Law

Eva Bonda   / Contact: [email protected]
1. Cognitive Neuroscientist, NEUROAISTHESIS, Paris, France; 2. International Criminal Court at the Hague, The Netherlands;

Inter and intra-generational distribution of non-renewable resources, as cultural heritage, is a core issue of Social Justice. Cultural heritage includes tangible artworks of sculptural, epigraphic, architectural and pictorial nature and intangible traditions or rituals transmitted from generation to generation in the form of distinctive products from different populations across multiple timescales. Financial exploitation of appropriated or illegally exported art by cultural tourism arguably conflicts with fair distribution of resources intra-generationally, extending the risks of social injustice to inequity of economic and sustainability assets sharing for future generations.

       There is not yet a defined international legal regime to adequately address perennial conflicts concerning retentionist arguments refusing to restitute cultural property that is not organic element of the cultural heritage of a certain State. Arguments are credited or discredited on a fragmentary basis. For instance, the European Court of Human Rights has accepted that protecting cultural heritage is a legitimate aim that the State may pursue when interfering with individual rights. In March 2021, the International Criminal Court at the Hague publishes a Draft Policy1 on cultural heritage as the bedrock of cultural identity and endorses the understanding that crimes committed against cultural heritage constitute an attack on a particular group's identity, history, ingenuity, and artistic creation: ‘Crimes against or affecting cultural heritage often touch upon the very notion of what it means to be human'.1

What it means to be human is our brain that has been formed and modified through our active engagement in various sociocultural contexts, as immense progress in cognitive neuroscience has shown in last decades. fMRI research, based on comparative studies of population samples, reveals neural mechanisms of cultural and societal diversity. Ancient DNA approaches have now studied genomic variation of populations. Both approaches offer a genuine context to define artistic phenomena as cognitive social representations conceived and realized within distinct geo-historical, genomic and linguistic contexts.

         Accommodating ethical considerations that the ultimate aim of heritage conservation is not to preserve material for its own sake but to maintain and shape the values embodied by the heritage as represented by the human brain would foster respect for social justice through safeguarding of cultural identity and ensuring equity of rights for future generations. Foremost, the task is to instruct the global conservation art community towards a change from internalized colonial or hegemonial cultural beliefs into an international neuroethical code which itself alone can reaffirm the universality of art.

References:

  1. Draft Policy on Cultural Heritage, 22 March 2021, The Office of the Prosecutor, The International Criminal Court at the Hague, The Netherlands (see paragr. 17 p. 6).

Disclosure: None

 

Abstract 69  /  Presentation  /  TOP ABSTRACT (AJOB NEUROSCIENCE)

AJOB Neuroscience cover title

Top Abstract

Consciousness and the Ethics of Cerebral Organoid Research

Karola Kreitmair   / Contact: [email protected]
1. University of Wisconsin - Madison, School of Medicine and Public Health

Cerebral organoids (COs) are brain-like structures grown from human stem cells for the purpose of neuroscientific research. COs are becoming more autonomous and anatomically complex. The prospect of COs manifesting consciousness has led to discussion of the moral status of COs and consequently the ethical protections they should have in research. I argue, however, that focusing on the question of whether or not COs manifest consciousness is insufficient in determining their moral status. This is because the degree of moral status conferred through consciousness depends not only on structural features of the consciousness present, but also on the content of the conscious experience. Because COs do not exhibit behavior, the only means for detecting the presence of consciousness in COs is via the neural correlates of consciousness (NCC). However, inference from the NCCs merely provides information about the structural features of an other's conscious state and not about the content. Consequently, we cannot deduce from NCC alone whether a CO meets the requirements for conscious states that are sufficient for bestowing a degree of moral status that demands certain research protections. The upshot, I argue, is that the ethics of research involving COs depends not only on the answers to factual questions regarding the presence of conscious states along with ethical analysis of the moral obligations conferred by such conscious states, but importantly also depends on value judgments about the degree of tolerance we ought to have for error and uncertainty in determining the moral status of COs.

References:

None

Disclosure: None

 

Abstract 70  /  Presentation

Should we call it "mind-reading"? Brain-reading technologies and filling in the hermeneutical gaps to promote social justice

Paul Andrew Tubig 1, 2   / Contact: [email protected]
1. Department of Philosophy, Georgia Southern University, 2. Center for Neurotechnology, University of Washington

Brain-reading technologies—that is, technologies that record, process, and decode neural signals—is widely described and communicated as "mind-reading" technologies. For many ethicists, this raises an important question of whether the label "mind-reading" should be used to conceptualize brain-reading technologies. The concern is that the application of this label will shape how brain-reading technologies are perceived by publics, such as their normative properties, which, in turn, shape how publics respond to them. The application of the "mind-reading" label has been criticized as misrepresenting what the mind is and what brain-reading technologies actually do, implying that such devices enable others to read someone's mental contents (thoughts, beliefs, intentions, etc.), which may motivate unwarranted worries.

Although the "mind-reading" label should not be used so capaciously, I argue that the label is appropriately useful to describe the varieties of brain-reading technologies. My argument is based on the work of Ishani Maitra on hermeneutical injustice. I argue that the novelty of brain-reading technologies generates gaps in our shared linguistic/conceptual resources that make it difficult to communicate the normative properties of these technologies. The "mind-reading" label is useful in that it renders a legitimate worry with brain-reading technologies communicatively intelligible. It captures how these technologies can enable others to intrude into our mental lives. Abandoning the application of this label obscures this particular normative property. Thus, the "mind-reading" label serves as a valuable and normatively familiar conceptual tool to interpret brain-reading technologies in ways that promote a valued social objective, which is the protection of mental privacy. The "mind-reading" label does bring with it some important downsides that have been pointed out by many ethicists, such as introducing some distortions into our understandings of brain-reading technologies. Which distortions qualify as significant enough to make the label defective depends on what are our communicative goals.

References:

  • Fields, R. Douglas. 2020. “Mind Reading and Mind Control Technologies Are Coming.” Scientific American. https://blogs.scientificamerican.com/observations/mind-reading-and-mind-control-technologies-are-coming/. Published March 10, 2020. Accessed July 9, 2021.
  • Maitra, Ishani. 2018. “New Words for Old Wrongs.” Episteme 15(3): 345-362.
  • Rainey, Stephen, Stéphanie Martin, Andy Christen, Pierre Mégevand, and Eric Fourneret. 2020. “Brain Recording, Mind-Reading, and Neurotechnology: Ethical Issues from Consumer Devices to Brain-Based Speech Decoding.” Science and Engineering Ethics 26: 2295-2311.
  • Ryberg, Jesper. 2017. “Neuroscience, Mind Reading and Mental Privacy.” Res Publica 23: 197-211.
  • Wolpe, Paul Root. 2009. “Is the Mind Mine?” Forbes. https://www.forbes.com/2009/10/09/neuroimaging-neuroscience-mind-reading-opinions-contributors-paul-root-wolpe.html?sh=1ef9273f6147. Published October 9, 2009. Accessed July 9, 2021.

Disclosure: None

 

Abstract 71  /  Presentation  /  TOP ABSTRACT (AJOB NEUROSCIENCE)

AJOB Neuroscience cover title

Top Abstract

An eye for an eye: The disturbing relationship between psychiatric illness and the American death penalty

Sunidhi Ramesh   / Contact: [email protected]
Sidney Kimmel Medical College at Thomas Jefferson University

The Case: In 2004, 21-year-old Andre Thomas killed his wife, son, and daughter. Soon after, he was sentenced to death by a jury of his peers. The case made national headlines for three reasons. First, Andre used three different knives so as not to "cross-contaminate" the blood from each body; he believed that doing so would be the only way to ensure that the "demons" inside each of his victims would die. Second, even at the point of the murders, Andre had an extensive history of alcoholism, psychosis, and inter-generational trauma. Lastly, about six days after the killings, Andre Thomas gouged his right eye out with his fingers. Four years later, he ripped out his left eye. And he ate it.

Today, Thomas is awaiting execution in Texas. He is being housed in a psychiatric facility where he is on a regimen of antipsychotics for his official diagnosis of paranoid schizophrenia. The murders and the case that ensued tell a horrifying tale of the dance between psychiatric illness and the American criminal justice system. They also beg the question: how ill is too ill to be put to death?

Discussion: Per the M'Naghten Rule, a defendant can be deemed legally "insane" if they cannot understand the consequences of their criminal acts. It is generally understood that a variation of the rule also applies to the death penalty— that an individual being put to death must understand why. This, by default, requires some degree of insight and capacity. Yet, to date, no American court has ruled that severe psychiatric illness deems a person ineligible for the death penalty.

Andre Thomas' case is a microcosm of this issue, and his place on death row brings to question the purpose of criminal punishment. If Thomas has to be heavily medicated to not be floridly psychotic, does he truly have insight or capacity? Is retribution truly retribution if the defendant does not (at his unmedicated baseline) comprehend the crime for which he is being put to death? What does the justice system truly have to gain by putting this man (whose psychiatric state has continued to decline during his imprisonment) to death?

Conclusion: Criminal punishment in the United States is often justified by retribution, deterrence, and incapacitation. With the psychiatrically ill, these rationalizations lack validity and do not take into account the effects of severe mental illness on an individual's personhood, insight, and capacity.

References:

  1. Bennett, M. (2009). Criminal law as it pertains to ‘mentally incompetent defendants’: a McNaughton rule in the light of cognitive neuroscience. Australian & New Zealand Journal of Psychiatry, 43(4), 289-299.
  2. Roberts, C. F., & Golding, S. L. (1991). The social construction of criminal responsibility and insanity. Law and Human Behavior, 15(4), 349-376.
  3. Ewing, C. P. (1987). Diagnosing and treating “insanity” on death row: Legal and ethical perspectives. Behavioral Sciences & the Law, 5(2), 175-185.
  4. LaChance, D. (2016). Executing freedom: The cultural life of capital punishment in the United States. University of Chicago Press.
  5. Baumgartner, F., Davidson, M., Johnson, K., Krishnamurthy, A., & Wilson, C. (2017). Deadly justice: A statistical portrait of the death penalty. Oxford University Press.

Disclosure: None

 

Abstract 72  /  Presentation

How bad is it on a scale of 1 to 10? An analysis of the human experience of pain and how we approach it

Sunidhi Ramesh   / Contact: [email protected]
Sidney Kimmel Medical College at Thomas Jefferson University

The Case: Audrey was a 26-year-old female who presented to our hospital in late-April with fevers, chills, and bone pain consistent with acute leukemia. As part of the work-up for her condition, Audrey had to undergo a bone marrow biopsy, an invasive procedure that involves the insertion of a long needle into the ilium with the intention of aspirating marrow. After we consented her for the procedure, we informed Audrey that most patients only require local lidocaine injections to control their pain. In response, she warned us that she had a history of being "pain sensitive"— that she was anxious and afraid of what the procedure would entail. After a short discussion with vague reassurances, we moved forward with the biopsy.

In the hours that followed, Audrey writhed and screamed with every probe of the needle. Her heart rate soared, and her tears soaked the sheets of her hospital bed. On rounds the next morning, the team referred to Audrey as "sensitive" and "difficult," openly contemplating her future ability to handle chemotherapy.

Discussion: Audrey's case is not unique. Pain, while multimodal and multifaceted, is still being approached by medical care with single digits (i.e., "How bad is it on a scale of 1 to 10?") and unimodal pain regimens (i.e., local lidocaine). And, because pain is both physiologic and subjective, medicine has not progressed far in its elucidation of it. As Dr. Peter Latham wrote in the early 1800's, "it would be a great thing to understand pain in all its meanings."

Neuroscience has added both answers and questions to the pain literature. Some authors have argued for a delineation between pain and nociception, with the latter being an object of sensory physiology. Others, with the help of fMRI and PET technology, have argued that neural patterns shed light on pain's "infinite variety."

Ultimately, Audrey's experience and our modern interpretation of pain together warrant a robust ethical reflection that brings together: 1) the neuroscience of pain; 2) the individual human in pain; 3) the cultural context of the medical encounter; 4) the consequences of prior experiences with and expectations of pain; and 5) the ultimate purpose of the "treatment" of pain. It is only with this multidimensional approach that pain (and the "pain experience") can be addressed in the medical setting, as science and technology continue to present more answers (and questions) towards our understanding of it.

References:

  1. Jensen, T. S., Baron, R., Haanpää, M., Kalso, E., Loeser, J. D., Rice, A. S., & Treede, R. D. (2011). A new definition of neuropathic pain. Pain, 152(10), 2204-2205.
  2. Morton, D. L., Sandhu, J. S., & Jones, A. K. (2016). Brain imaging of pain: state of the art. Journal of pain research, 9, 613.
  3. Nijs, J., Torres-Cueco, R., Van Wilgen, P., Lluch Girbés, E., Struyf, F., Roussel, N., ... & Meeus, M. (2014). Applying modern pain neuroscience in clinical practice: criteria for the classification of central sensitization pain. Pain physician, 17(5), 447-457.
  4. Borsook, D. (2012, May). A future without chronic pain: neuroscience and clinical research. In Cerebrum: the Dana forum on brain science (Vol. 2012). Dana Foundation.

Disclosure: None

 

Abstract 73  /  Presentation

Internet-based technology, memory, and neuroethics: ethical implications of our cognitive relationships with the Internet and ensuring social justice in an age of rapid technological progress

Vishruth Nagam (1,2,3,4)   / Contact: [email protected]
1. Honors College, Stony Brook University; 2. Department of Psychology, Stony Brook University; 3. Renaissance School of Medicine at Stony Brook University; 4. Dignity Health Neurological Institute of Northern California

Background: 58.7% of the world's population had access to the Internet by 2016. Internet use has increased due to the COVID-19 pandemic, where regular in-person activities are now shifting to Internet-based mediums. The Internet is becoming a daily part of life for many; it thus becomes important to investigate potential resulting cognitive and ethical implications.

Introduction: Transactive memory and semantic memory are implicated with Internet use. Research has shown that 1) transactive memory systems with the Internet—the transactive memory source that Internet users access to acquire desired information—are correlated with lower cognitive burden on semantic memory, 2) when semantic memory is accessed first, subsequent successful retrieval of information is likely to occur from only semantic memory or both transactive memory and semantic memory, and 3) when transactive memory is accessed first, subsequent successful retrieval of information is likely to occur from only transactive memory [1,2,3]. These findings suggest that, by repeatedly defaulting to access transactive memory, Internet users can willingly reinforce transactive memory systems with the Internet, which renders transactive memory systems' permanence subject to users' will. Furthermore, as Internet users often have a vague idea of desired information before searching for it on the Internet, finding #2 may reflect that first accessing semantic memory serves as an aid for subsequent transactive memory use, and finding #3 that the need to retrieve information from semantic memory is eliminated, as the transactive memory source would already provide the desired information.

Discussion: Such findings raise several ethical concerns. This presentation will apply a holistic review of the ethics of memory to the novel, rapidly growing concern of Internet-based transactive memory use. Neuroethical issues and dilemmas discussed include but are not limited to: mental health and declining social interaction with human transactive memory sources (friends, colleagues, etc.), causality and impact analysis of disparities in Internet accessibility, impact of Internet-based transactive memory use on sense of self and relevant perspectives (e.g., extended mind perspective) [4], privacy and informed consent in memory modification [5], cognitive responsibilities (e.g., to remember or forget) in social settings given the default of Internet-based devices to store or "technologically remember" information, and permanence of transactive memory systems with the Internet.

Conclusion: This presentation will explore agreeable ethical guidelines addressing the above concerns and ethical responsibilities and liabilities of involved entities (manufacturers, policymakers, the public, etc.), while discussing the importance of broader public and societal justice in an age of rapid technological progress.

References:

  1. Nagam, V. (2020). Determination of the Cognitive Relationships Between Internet-Based Technology and Internet Users. Manuscript submitted for publication.
  2. Wegner, D.M. (1987) Transactive Memory: A Contemporary Analysis of the Group Mind. In: Mullen B., Goethals G.R. (eds) Theories of Group Behavior. Springer Series in Social Psychology. Springer, New York, NY. Pp 185-208. Retrieved January 7, 2020, from https://link.springer.com/chapter/10.1007/978-1-4612-4634-3_9
  3. Hewitt, L.Y. & Roberts, L.D. (2015). Transactive memory systems scale for couples: development and validation. Front. Psychol. 6:516. Retrieved June 25, 2021, from https://dx.doi.org/10.3389/fpsyg.2015.00516
  4. Kourken, M. & Sutton, J. (2017). Memory. E.N. Zalta (Ed.), The Stanford Encyclopedia of Philosophy (Summer 2017 Edition). Retrieved June 29, 2021, from https://plato.stanford.edu/archives/sum2017/entries/memory/
  5. Beverly, J.M., Blumenrath, S., Chiu, L., Davis, A., Fessenden, M., Galinato, M., Halber, D., Hopkin, K., Kelly, D., Parks, C., Richardson, M., Rojahn, S., Sheikh, K.S., Weintraub, K., Wessel, L., Wnuk, A., & Zyla, G. (2018). Brain Facts: A Primer on the Brain and Nervous System. Pgs. 33-34, 121. Retrieved March 22, 2020.

Disclosure: None

 

Abstract 74  /  Presentation

Prosthetic Self-regulation? DBS and autonomy in Treatment Resistant Depression patients

Abel Wajnerman Paz   / Contact: [email protected]
Alberto Hurtado University

The adaptive BCI known as ‘closed-loop deep brain stimulation' (clDBS) is a device that stimulates the brain in order to prevent or modulate pathological neural activity patterns and automatically adjusts stimulation levels based on computational algorithms that detect or predict those pathological processes. One of the prominent ethical concerns raised by clDBS is that it may take subjects "out of the decisional loop." By inhibiting or modulating undesirable neural states ‘automatically,' i.e. without any control or supervision by the subject, the device potentially undermines her autonomy.

Some argue that this problem can be solved or minimized by thinking through key ethical concepts, like ‘autonomy. For instance, it has been suggested that if relationally conceived, autonomy is not threatened by clDBS. According to this view, autonomy essentially depends on external (e.g., social or cultural) factors (Stoljar 2018). Goering et al. (2017) propose to extend the relational account of agency and autonomy to include human-computer interaction and suggest that the mechanisms of clDBS, even if external to the brain and exerting some degree of control over the individual, may support a patient's autonomy.

I will analyze this strategy through a combination of "empirical neuroethics" and "neurobioethics" (Farisco, Salles & Evers 2018). I first identify (some aspects of) the neural basis of autonomy (empirical neuroethics) and then asses how this basis is affected by neurotechnological applications (neurobioethics).

A key observation is that DBS applications are substantially different from one another, each involving a specific neurological or psychiatric condition, neural target, mechanism and symptom(s). Thus, these applications constitute very different forms of brain-computer interaction and therefore some of them may not be instances of relational autonomy. In this presentation, I will analyze how different clDBS applications for treatment resistant depression may affect autonomy differently. I will argue that while internal capsule/ventral striatum (VC/VS) DBS can be considered a case of relational autonomy, subgenual cingulate gyrus (Cg25) DBS might not. Autonomy requires some degree of self-regulation of motivational states (Buss & Westlund 2018), which is supported by VC/VS DBS but is absent in Cg25 DBS. In Cg25 DBS the device itself directly regulates motivational states, thus substituting (instead of supporting) the auto-regulatory cognitive processes required for autonomous action.

References:

  • Buss, S., & Westlund, A. (2018) "Personal Autonomy", in Edward N. Zalta (ed.) The Stanford Encyclopedia of Philosophy (Spring 2018 Edition),
  • Farisco, M., Salles, A., & Evers, K. (2018). Neuroethics: A conceptual approach. Cambridge Quarterly of Healthcare Ethics, 27(4), 717-727.
  • Goering, S., Klein, E., Dougherty, D. D., & Widge, A. S. (2017). Staying in the loop: Relational agency and identity in next-generation DBS for psychiatry. AJOB Neuroscience, 8(2), 59-70.
  • Stoljar, N., "Feminist Perspectives on Autonomy", The Stanford Encyclopedia of Philosophy (Winter 2018 Edition), Edward N. Zalta (ed.).

Disclosure: None

 

Abstract 75  /  Presentation  /  TOP ABSTRACT (AJOB NEUROSCIENCE)

AJOB Neuroscience cover title

Top Abstract

Ethical challenges in brain organoid research and research communication: outlining scope for neuroethical contribution

Anna Pacholczyk   / Contact: [email protected]; [email protected]
Institute for Medical and Biomedical Education, St. George’s University of London, London, UK

Background: Brain organoids are small 3D structures of neural tissue grown in the laboratory. Developed from stem cells, they are often allowed to grow undirected into a variety of architectures, although there have also been efforts to direct cell differentiation for more predictable outcomes. Emerging methods include growing cells on 3D scaffolds, controlling the development of the organoid, as well as growing larger structures through vascularisation (Mansoor et al. 2020). The great utility of brain organoids as scientific neuro-disease models addresses a scientific gap in methods of investigation and underlies its importance (Chen et al 2019). Yet, a growing number of commentators highlight ethical issues of concern (e.g. Koplin & Savulescu 2019; Lavazza 2020).

Objectives: The proposed talk aims to (1) map the landscape of ethical issues in brain organoid research, (2) outline the scientific directions of brain organoid research to identify further directions of ethical inquiry, and (3) evaluate key ethical problems that would benefit from contribution of neuroethics.

Methods: scoping review, mapping of ethical issues, applied ethical analysis

Discussion: The development of brain organoids as a neuroscientific technique raises a host of ethical issues. Firstly, ethical concerns surround the research on human tissue, and – specifically, human brain and stem cell derived tissues (Lavazza 2019); as well as clinical applications – for example, in precision medicine (Lesnink et al. 2020).

Secondly, the prospect of creating neural systems that might achieve morally relevant properties (experience of pain or consciousness) raises the need for ethical examination (Koplin & Savulescu 2019; Ankeny & Wolvetang, 2021). In my view, this raises profound epistemic and conceptual issues warranting neuroethical attention: how do we know if an entity grown in a lab became sufficiently conscious to warrant moral protection? How do we clarify and operationalise the criteria for moral personhood to allow assessment of the duties that we owe to those novel beings?

Third, neuroethics scholars could benefit the field by examining the issue of media reporting, narratives surrounding brain organoid research, as well as public communication of science. Neuroethics is strongly positioned to be able to aid in exploring and addressing all three of those areas of inquiry.

Conclusion: Brain organoids raise three broad areas of ethical concern. The issues surrounding research on human tissues, proactive exploration of the issue of potential consciousness as well as media/public communication of science need further attention, and neuroethics scholars are uniquely positioned to contribute to their ethical examination.

References:

  • Haselager, D. R., Boers, S. N., Jongsma, K. R., Vinkers, C. H., Broekman, M. L., & Bredenoord, A. L. (2020). Breeding brains? Patients’ and laymen’s perspectives on cerebral organoids. Regenerative medicine, 15(12), 2351-2360.
  • Koplin, J. J., & Savulescu, J. (2019). Moral limits of brain organoid research. Journal of Law, Medicine & Ethics, 47(4), 760-767.
  • Lavazza, A. (2019). What (or sometimes who) are organoids? And whose are they?. Journal of medical ethics, 45(2), 144-145.
  • Lavazza, A. (2020). Potential ethical problems with human cerebral organoids: Consciousness and moral status of future brains in a dish. Brain Research, 147146.
  • Lensink, M. A., Jongsma, K. R., Boers, S. N., Noordhoek, J. J., Beekman, J. M., & Bredenoord, A. L. (2020). Responsible use of organoids in precision medicine: the need for active participant involvement. Development, 147(7), dev177972.
  • Ankeny, R. A., & Wolvetang, E. (2021). Testing the Correlates of Consciousness in Brain Organoids: How Do We Know and What Do We Do?. The American Journal of Bioethics, 21(1), 51-53.

Disclosure: None

 

Abstract 76  /  Presentation

AI in healthcare – examining challenges related to justice and trust, and the contribution of procedural justice

Anna Pacholczyk   / Contact: [email protected]; [email protected]
Institute for Medical and Biomedical Education, St. George’s University of London, London, UK

Background: AI is a fast advancing field with a wealth of current and possible healthcare applications including applications in the ‘neuro' arena (Yu, Beam & Kohane 2018), raising considerable ethical unease (Di Nuci, 2019) and requiring intense public and academic scrutiny to facilitate ethical implementation.

Objective: The proposed talk aims to (1) consider AI from the lense of a public good, (2) outline ethical challenges facing the use of AI in healthcare, and (3) evaluate the possible contribution of procedural justice approaches to addressing these challenges.

Methods: applied ethical analysis

Discussion: First, I will explore the conceptualization of AI in healthcare as a public good (Stiglitz, 1999). I consider elements of AI application as a local public good. Second, I consider Stiglitz's conceptualization of global public good against criteria of nonrivalrous consumption and nonexcludability, relating it to the conceptualization of knowledge as a public good and applying it to AI in healthcare.

Next, I outline possible challenges to the healthcare applications of AI. These include challenges related to stakeholder attitudes (e.g. user trust), adaptations needed to enable successful adoption (e.g. creation of usable data infrastructures), limitations of the technology (e.g. bias and explainability) and potential negative impacts of adoption (e.g. privacy and workforce impacts). I will focus on issues related to trust, explainability and bias, considering some examples of ‘things going wrong' to illustrate the challenges.

Third, I consider procedural justice as a possible solution and outline its advantages and limitations. I will argue that the common approach to ‘cashing out' procedural justice in healthcare allocation setting, namely ‘accountability for reasonableness' (Daniels & Sabin 1998; Daniels, 2000) can be criticized for underplaying the need for public participation in decision making. Further, I will argue that stakeholder and public participation in decision making regarding use of AI in healthcare is an important condition for and a needed facilitator of legitimacy in healthcare applications of AI.

Conclusion: Elements of AI infrastructure and implementation can be considered to be public goods, which impacts how we should think about their governance. However, AI application to healthcare is faced with a number of challenges, including those related to bias, explainability and trust. While procedural justice can create important scaffoldings for (partially) addressing those issues, it under-emphasises stakeholder and public participation in decision-making processes. This limitation needs to be addressed to create conditions for ethical application of AI in healthcare.

References:

  • Daniels, N. (2000), ‘Accountability for reasonableness’, British Medical Journal, 321: 1300–1301.
  • Daniels, N. and J. Sabin (2008), Setting Limits Fairly: Learning to Share Resources for Health, 2nd edn, Oxford: Oxford University Press
  • Di Nucci, E. (2019). Should we be afraid of medical AI?. Journal of Medical Ethics, 45(8), 556-558.
  • Yu, K. H., Beam, A. L., & Kohane, I. S. (2018). Artificial intelligence in healthcare. Nature biomedical engineering, 2(10), 719-731.
  • Stiglitz, J. E. (1999). Knowledge as a global public good. Global public goods: International cooperation in the 21st century, 308, 308-325.

Disclosure: None

 

Abstract 77  /  Presentation  /  TOP ABSTRACT (AJOB NEUROSCIENCE)

AJOB Neuroscience cover title

Top Abstract

Too rational: How predictive coding’s success risks harming the mentally disordered and ill

Lee Elkin1, Karolina Wiśniowska2 and Veljko Dubljevic1   / Contact: [email protected]
1. North Carolina State University, 2. Jagiellonian University

Background: Predictive coding has become an empirically successful research program in cognitive neuroscience and related disciplines.[3] The theory postulates that the human mind aims to minimize prediction errors through a form of Bayesian inference, where prediction errors are corrected by updating prior expectations in perception systematically based on incoming sensory information. Predictive coding models have not only had much success in illuminating the cognitive mechanism of perceptual inference in healthy individuals but also in explaining slowed development in autistic individuals [5] and delusions/psychosis in schizophrenic individuals [4].

Methods: We employ conceptual analysis in developing an analogical argument against employing the Bayesian language that is fundamental to predictive coding, particularly in explaining the dysfunctional or defective perceptual mechanisms underlying slowed development in autistic individuals and delusions/psychosis in schizophrenic individuals. Specifically, we show how the language of predictive coding yields a significant risk of socially harming or stigmatizing mentally disordered and ill individuals, similar to other psychological constructs, e.g., measures of intelligence.

Results: While the Bayesian approach to modeling the human mind has shown much promise due to its explanatory power, we argue that its extension to mental disorders and illnesses carries a significant risk of increasing social harm to individuals having such disorders and illnesses. We base this on the conventional use and understanding of the term ‘Bayesian' that is equated or at least closely related to ‘rational'.[1] Given a strong association between ‘Bayesian' and ‘rational', it follows that any deviation from being optimally ‘Bayesian' tends towards being ‘irrational'. Realization of the latter consequence in the context of studying autism and schizophrenia would be socially harmful to individuals having such conditions, as they might be (in)directly casted as having ‘irrational' brains due to deviations from being optimally Bayesian. Since there is much institutional, social, and self-stigma already surrounding mental illness, where mentally ill individuals are thought to be a danger to the public and themselves [2], negative stereotypes towards autistic and schizophrenic individuals may be amplified through the unfortunate descriptor, ‘irrational,' further harming such individuals socially.

Conclusions: We suggest that proponents of predictive coding revise the Bayesian language that is fundamental to the theory that may lead to the realization of an association between mental disorder/illness and ‘irrational,' which would cause further social harm to certain already stigmatized populations. Our conclusion is strengthened by a comparative analysis of other psychological constructs that have had negative social repercussions.

References:

  1. Oaksford, M., & Chater, N. (2007). Bayesian Rationality: The Probabilistic Approach to Human Reasoning. Oxford University Press.
  2. Parcesepe, A. M., & Cabassa, L. J. (2013). Public stigma of mental illness in the United States: a systematic literature review. Administration and Policy in Mental Health, 40(5), 384–399.
  3. Rescorla, M. (2020). A realist perspective on Bayesian cognitive science. In A. Nes and T. Chan (eds.), Inference and Consciousness. Routledge.
  4. Sterzer, P., Adams, R. A., Fletcher, P., Frith, C., Lawrie, S. M., Muckli, L., ... & Corlett, P. R. (2018). The predictive coding account of psychosis. Biological Psychiatry, 84(9), 634-643.
  5. Van de Cruys, S., Evers, K., Van der Hallen, R., Van Eylen, L., Boets, B., de-Wit, L., & Wagemans, J. (2014). Precise minds in uncertain worlds: predictive coding in autism. Psychological Review, 121(4), 649.

Disclosure: None

 

Abstract 78  /  Presentation

Medical Ethics on Patient Confidentiality: Case Study on Epileptic Patient

Nimah Alsomali   / Contact: [email protected]
King Fahad Medicla City

Patient confidentiality is a fundamental principle in medical ethics. Confidentiality guarantees the patient that any information shared with health providers would be kept secret and would not be shared with anyone without their authorization. The author discusses confidentiality breaching's case study on an epileptic patient. A neurologist was 'chatting' with his wife, a school principal, about an interesting case that came to his clinic that day. The patient was a 50-year-old male diagnosed with epilepsy but not very compliant to medications because some of the anti-epileptic drugs make him tired, compromising his occupational functioning as a school bus driver. His wife showed unusual interest and asked the neurologist about the name of the patient because one of her school's bus drivers has developed a tendency of getting late to work, and she is concerned about the safety of the children he drives. The neurologist was not sure if he should tell her, but he eventually did. The wife discovered that he was the same driver she meant and fired him first thing the next morning, accusing him of lying and hiding a grave condition.

In this case study, Beauchamp and Childress' principles including autonomy, beneficence, non-maleficence, and justice, will be applied to assess the ethical dilemmas. The author also analyses the physician's duty to protect third parties (children) and its consequences on the patient. Finally, the author concludes that the principle of confidentiality offers a safe environment between patients and health providers by guaranteeing trust and faith. Thus, ignoring the patient's right to confidentiality is considered as an act of unethical and illegal practice since it violates the Hippocratic Oath of medical practice.

References:

None

Disclosure: None

 

Other

Abstract 79  /  Presentation

Expanding the neuroethical ethos: Social justice and neuroethics at the Rehab Neural Engineering Labs

Juhi Farooqui (1), Sarah Dawod (2), Josep-Maria Balaguer (2), Devapratim Sarma (1)   / Contact: [email protected]
1. Carnegie Mellon University 2. University of Pittsburgh

In the last year, the COVID-19 global pandemic has laid bare deep inequities in society. In the United States, inequities along the axes of race, disability, and socioeconomic status are becoming a part of our collective social consciousness, forcing institutions to awaken out of their disciplinary slumbers. At the University of Pittsburgh's Rehab Neural Engineering Labs (RNEL) this awakening has prompted us to rethink our approach to neuroethics.

The central aim of the RNEL neuroethics effort is the cultivation of a neuroethical ethos - a research culture wherein ethics is an intrinsic part of research, from ideation to experimentation and beyond (Farooqui et al. 2021). Our methods are based on the idea that internalizing neuroethical principles through discourse can empower researchers to behave ethically (Johnsson et al. 2014). To facilitate discourse, we draw on models of engagement developed at the Center for Neurotechnology at the University of Washington (Goering and Klein, 2020; Tubig and McCusker, 2021). We engage lab members with neuroethical topics by moderating open discussion sessions, grounded in both disciplinary and practical expertise and guided by thoughtful, deliberative discussion questions.

Our recent work builds on this discursive approach to expand lab members' understandings of neuroethical principles and encourage deeper reflection on social justice. We held a series of explicitly social-justice-oriented discussion sessions focusing on perceived discrimination, disparity, disability rights, and trust and race in medicine, with engagement from invited subject-area experts. Topics were chosen to reflect pressing inequities that affect our research, and to align with social justice efforts that many lab members have taken on both within and outside the lab.

Our approach enables researchers to organically connect neuroethical principles with their own lived values and experiences, thereby encouraging active application of these principles -- consistent with the theory that genuine actions reflect an individual's purpose and motivation, including morals and lived values (Korsgaard, 2009). Feedback from our discussion participants indicated strong engagement and a deep curiosity about social justice topics. Particularly noteworthy were the connections drawn by participants between the newly synthesized topics and elements of their own research or social justice efforts of personal importance. This response has inspired us to design all future sessions through a social justice lens, inviting experts whose work challenges injustice and orienting discussion questions to encourage reflection on inequities and justice. In this way, we hope to make not only neuroethics, but also justice, an integral part of research.

References:

  • Farooqui, J., Dawod, S., & Sarma, D. (2021). Towards a Neuroethical Ethos: A Case Study in Reframing Neuroethics Education for Engineers and Researchers. The Neuroethics Blog.
  • Goering, S. & Klein, K. (2020). Embedding Ethics in Neural Engineering: An Integrated Transdisciplinary Collaboration. In Brister, E. & Frodeman, R. (Eds.), A Guide to Field Philosophy: Case Studies and Practical Strategies (pp. 17-34). Routledge.
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Disclosure: None

 

Abstract 80  /  Presentation

Browser-based brain-computer interfaces: What comes after true web access?

Garrett Flynn (1,2), Dong Song (2), Marientina Gotsis (1)   / Contact: [email protected]
1. Department of Interactive Media & Games, University of Southern California, Los Angeles, CA, USA; 2. Department of Biomedical Engineering, University of Southern California, Los Angeles, CA, USA

Brain-computer interfaces (BCIs) convert activity in the central nervous system to artificial outputs that allow users to communicate with and control their external environments (Wolpaw et al. 2002). Since the early 2000s, BCI researchers have actively pursued the development of brain-controlled web browsing applications that provide "true web access" to individuals with severe motor deficits such as amyotrophic lateral sclerosis (ALS), stroke, spinal-cord injury, cerebral palsy, and other neuromuscular disorders (Mankoff et al. 2002; Mugler et al. 2010). Modern web technologies, however, have begun to show promise for directly facilitating interaction with neural activity (Stegman et al. 2020). While recent literature has discussed why modern web technologies are situated to handle neural data, existing browser-based BCI applications remain to be fully characterized.

In this scoping review, we outline the current state-of-the-art in browser-based BCI systems by presenting existing applications and their associated research subjects, technical architectures, and evaluation methods. Five online databases were searched to identify papers published before February 2021, from which we selected 13 that present browser-based BCI applications. Our results indicate that browser-based BCI applications have been dominated by web browsing and spelling systems for those with severe motor deficits. System architectures were heterogeneous within and between application domains Despite this trend, most applications were evaluated on healthy end-users with little attention to user satisfaction. Additionally, system architectures were heterogeneous within and between application domains. Existing approaches to browser-based BCI research tend to restrict application use to a subset of potential end-users. Future research on best practices for developing browser-based BCI applications will enable their benefits to flow to a wider range of end-users in home-use settings.

References:

  • Mankoff, Jennifer, Anind Dey, Udit Batra, and Melody Moore. 2002. “Web Accessibility for Low Bandwidth Input.” Annual ACM Conference on Assistive Technologies, Proceedings, 17–24. https://doi.org/10.1145/638252.638255.
  • Mugler, Emily M., Carolin A. Ruf, Sebastian Halder, Michael Bensch, and Andrea Kübler. 2010. “Design and Implementation of a P300-Based Brain-Computer Interface for Controlling an Internet Browser.” IEEE Transactions on Neural Systems and Rehabilitation Engineering 18 (6): 599–609. https://doi.org/10.1109/TNSRE.2010.2068059.
  • Stegman, Pierce, Chris S. Crawford, Marvin Andujar, Anton Nijholt, and Juan E. Gilbert. 2020. “Brain-Computer Interface Software: A Review and Discussion.” IEEE Transactions on Human-Machine Systems 50 (2): 101–15. https://doi.org/10.1109/THMS.2020.2968411.
  • Wolpaw, Jonathan R., Niels Birbaumer, Dennis J. McFarland, Gert Pfurtscheller, and Theresa M. Vaughan. 2002. “Brain-Computer Interfaces for Communication and Control.” Clinical Neurophysiology. https://doi.org/10.1016/S1388-2457(02)00057-3.

Disclosure: The authors disclose their role as founders of The [email protected] Initiative, where funding has previously been received from the USC Arts & Humanities Initiative. In-kind support has also been provided by OpenBCI, Enosis, and the USC SMART-VR Center.