Connectionists: NIH BRAIN Neuroethics Workshop on Sharing Human Brain Data from Biomedical Research – July 17-18, 2023

[Joe Monaco]

Dear colleagues,

Accessibility, transparency, bias, and ethical risks for the sharing and reuse of human brain data are increasingly important considerations in neuroscience and artificial intelligence, including research that applies human brain data in modeling biological structures or building intelligent systems. 

You are invited to attend an upcoming Workshop on Ethics of Sharing Individual Level Human Brain Data Collected in Biomedical Research <https://event.roseliassociates.com/brain-newg-ws-july-2023/>. This workshop, hosted by the BRAIN Neuroethics Working Group <https://braininitiative.nih.gov/about/neuroethics-working-group> (NEWG), is scheduled as a two-part hybrid event virtually and in-person in Bethesda, Maryland on *Monday, July 17, 2023 and Tuesday, July 18, 2023 from approximately 10:00 AM ET – 5:00 PM ET on both days.*
 
Data sharing accelerates scientific progress and maximizes the societal value of research, providing an ethical imperative to share data. However, sharing human research data may involve potential risks to participants or communities. Some scholars have argued the risks of data sharing may be different for brain data than other types of biomedical data. The National Institutes of Health (NIH) in the US is committed to promoting responsible data sharing (NOT-OD-21-013 <https://grants.nih.gov/grants/guide/notice-files/not-od-21-013.html>). In order to put appropriate safeguards in place to manage potential risks of data sharing, a better understanding of what the risks are of sharing different types of human brain data is critical.
 
The US BRAIN Initiative <https://braininitiative.nih.gov/> is at the forefront of data sharing in neuroscience at the NIH (see NOT-MH-19-010 <https://grants.nih.gov/grants/guide/notice-files/NOT-MH-19-010.html>) and it has an opportunity to carefully consider these ethical challenges with the input of the BRAIN Neuroethics Working Group <https://braininitiative.nih.gov/about/neuroethics-working-group> (NEWG). The workshop aims to explore meaningful ways to categorize human brain data by potential risks of data sharing. Additionally, resulting differences in how to treat the data will be considered. More information, including the workshop agenda <https://event.roseliassociates.com/brain-newg-ws-july-2023/agenda/> and registration details <https://event.roseliassociates.com/brain-newg-ws-july-2023/registration/>, can be found on the workshop website <https://event.roseliassociates.com/brain-newg-ws-july-2023/>. Workshop panels and speakers include:

*Panel 1: The data that is collected and stored by neurotechnologies and the inferences that can be made from these data*
 • Susie Huang, MD, PhD <https://www.nmr.mgh.harvard.edu/user/7054>, Associate Professor of Radiology, Harvard Medical School
 • Lorna Quandt, PhD <https://vl2.gallaudet.edu/people/lorna-quandt>, Associate Professor of Educational Neuroscience, Gallaudet University
 • Doris Wang, MD, PhD <https://www.ucsfhealth.org/providers/dr-doris-wang>, Assistant Professor of Neurosurgery, University of California at San Francisco,
 • Jennifer Collinger, PhD <https://www.rnel.pitt.edu/people/jennifer-l-collinger-phd>, Associate Professor of Physical Medicine and Rehabilitation, University of Pittsburgh
*Panel 2: Inferences to be drawn from data and their implications for data sharing*
 • Conor Russomano <https://conorrussomanno.com/>, Founder and CEO, OpenBCI
 • Alexander Huth, PhD <https://www.cs.utexas.edu/people/faculty-researchers/alexander-huth>, Assistant Professor of Neuroscience, University of Texas at Austin
 • Jocelyn Ricard <https://knight-hennessy.stanford.edu/people/jocelyn-ricard>, Graduate Student, Stanford University
 • Michael Young, MD <https://www.braingate.org/team/michael-young/>, Associate Director, NeuroRecovery Clinic, Massachusetts General Hospital
*Panel 3: The potential risks of sharing different types of human brain data*
 • Russell Poldrack <https://poldracklab.org/>, PhD, Professor of Psychology, Stanford University
 • Sara Berger, PhD <https://research.ibm.com/people/sara-berger>, Senior Research Scientist, IBM
*Panel 4: Research participants’ perspectives on sharing human brain data*
 • Nathan Copeland, Research participant
 • Christine Von Raesfeld <https://www.peoplewithempathy.org/team#CVR>, Founder and CEO of People with Empathy
 • Amy McGuire, JD, PhD <https://www.bcm.edu/people-search/amy-mcguire-26394>, Leon Jaworski Professor of Biomedical Ethics and Director, Baylor College of Medicine

*Workshop Details*

More information, including the workshop agenda <https://event.roseliassociates.com/brain-newg-ws-july-2023/agenda/>, can be found on the workshop website <https://event.roseliassociates.com/brain-newg-ws-july-2023/>. *Registering <https://event.roseliassociates.com/brain-newg-ws-july-2023/registration/> for the event will enable you to attend the workshop and will ensure that you can receive updates about the products emerging from the workshop.* Please note that in-person workshop spots may be limited, so please register for in-person attendance by *Friday, July 7, 2023*. If you prefer to attend virtually, please register to attend to engage with workshop speakers. You can also watch via NIH Videocast at the links below:
 • July 17, 2023 (10:00 a.m. – 5:00 p.m. ET) <https://videocast.nih.gov/watch=49901>
 • July 18, 2023 (10:00 a.m. – 5:00 p.m. ET) <https://videocast.nih.gov/watch=49903>

For workshop content-related questions, please contact Drs. Nina Hsu (nina.hsu at nih.gov) and Saskia Hendriks (saskia.hendriks at nih.gov). For technical assistance, please contact Ella Blue (ella.blue at roseliassociates.com).


_______________________________________________
*Joseph D. Monaco, Ph.D.*
Scientific Program Manager [C] (NINDS/OD)
*Office of the BRAIN Director*
joseph.monaco at nih.gov

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