Brain Data Governance and Neurorights

April 23, 2021

Cable network server in locked cabinet; Taylor Vick @tvick; Unsplash, https://unsplash.com/photos/M5tzZtFCOfs

The increasing use of neurotechnological devices for basic neuroscience research, clinical applications, but also in the consumer domain, creates substantial ethical and legal challenges for governing the access and use of human brain data collected by these devices. Furthermore, some neurotechnologies, such as AI-based closed-loop brain-computer interfaces, may interfere with a person's mental privacy or mental integrity which has given rise to a debate on the necessity and precise legal framing of neuroprotection laws, also referred to 'neurorights.'

In this interdisciplinary panel discussion, panelists explored and discussed the technical, ethical, and legal dimensions of brain data governance and neurorights.

Speakers include:

  • Samir Das, Montreal Neurological Institute, McGill University
  • Stephen Rainey, Oxford Uehiro Centre for Practical Ethics, University of Oxford
  • Fruszina Molnár-Gábor, Heidelberg Academy of Sciences
  • Philipp Kellmeyer, University Medical Center Freiburg (moderator)

Recording

Resources

During the webinar, speakers references several groups, research and practices. A few include:

  • International Neuroinformatics Coordinating Facility – This organization develops, evaluates, and endorses standards and best practices that embrace the principles of Open, FAIR, and Citable neuroscience. 
  • BrainCom Project – BrainCom is a collaborative research project that aims to develop a new generation of neuroprosthetic devices for large-scale and high density recording and stimulation of the human cortex, suitable to explore and repair high-level cognitive functions.
  • NeuroProtection Milestones – Frameworks to inform neurotechnology policy around the world from the Columbia NeuroRights Initiative.
  • Book chapter – Rainey S., McGillivray K., Fothergill T., Maslen H., Stahl B., Bublitz C. (2021) Data and Consent Issues with Neural Recording Devices. In: Friedrich O., Wolkenstein A., Bublitz C., Jox R.J., Racine E. (eds) Clinical Neurotechnology meets Artificial Intelligence. Advances in Neuroethics. Springer, Cham. https://doi.org/10.1007/978-3-030-64590-8_11

Speakers

Image of Samir Das
Samir Das

Montreal Neurological Institute
McGill University

Samir Das is the Associate Director of Technology for McGill Centre for Integrative Neuroscience at the Montreal Neurological Institute. His work focuses on image processing, software and database development, and systems design. He is the lead of the LORIS project and is well experienced in image processing, statistical analysis, pipeline/tool development and high performance computing. He has also spent many years pushing Open Science initiatives, as well as best practices in data sharing.

Image of Stephen Rainey
Stephen Rainey

Oxford Uehiro Centre for Practical Ethics
University of Oxford

Dr Stephen Rainey is a research fellow in the Oxford Uehiro Centre for Practical Ethics. He is a working in the Horizon2020-funded project BrainCom which is developing therapeutic brain-computer interfaces that will enable communication for users with debilitating speech conditions. Dr Rainey studied philosophy in Queen's University Belfast and obtained his PhD in 2008 with a thesis on rationality. He has taught a range of philosophical topics, and worked on a number of European Commission-funded research projects. These have included work on ethics, emerging technologies, and governance. He contributes to European Commission ethical and scientific evaluation panels for the funding of research projects. These have included proposals for ERC and Marie-Curie grants. Stephen has research interests in the philosophy of language, rationality, governance, and artificial intelligence.

Image of Fruszina Molnár-Gábor
Fruszina Molnár-Gábor

Heidelberg Academy of Sciences

Fruzsina Molnár-Gábor works at the interface of health and medical law and data protection law. Through her research, she is helping to establish the field of biomedical law in Germany. Previously, academic engagement with the legal regulation of biomedical issues was mostly separated into the conventional legal subject areas, such as criminal, civil and public law. In her international publications, which are not limited to traditional legal journals, Molnár-Gábor takes a different approach by engaging in genuine interdisciplinary dialogue with experts in biomedicine. A trained lawyer, she is a member of two interdisciplinary working groups, "Machine Learning in Medical Technology" at acatech, Germany's National Academy of Science and Engineering, and "The Future of Medicine: Healthcare For All" at the Berlin-Brandenburg Academy of Sciences and Humanities.

Image of Philipp Kellmeyer
Philipp Kellmeyer

University Medical Center Freiburg

Dr. Kellmeyer is a neurologist at the University Medical Center Freiburg where he heads the Neuroethics & AI Ethics Lab at the Department of Neurosurgery. He studied human medicine in Heidelberg and Zurich and received a Master of Philosophy from the University of Cambridge (GB). As a neuroscientist he works in the fields of neuroimaging and translational neurotechnology, in particular the clinical application of artificial-intelligence-based brain-computer interfaces. He is a scientific member of the BrainLinks-BrainTools cluster of excellence at the University of Freiburg and Research Fellow in the "Responsible Artificial Intelligence" research group at the Freiburg Institute for Advanced Studies (FRIAS). In his neuroethical research he works on ethical, legal, social and political challenges of neurotechnologies, big data and artificial intelligence in medicine and research. He is also an affiliate of the Institute for Biomedical Ethics and History of Medicine at the University of Zurich, where he also teaches biomedical ethics.

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