A new detailed summary is available for a workshop held in July on the ethics of sharing human brain data, including recaps from panel presentations from researchers, ethicists, and research participants.
The BRAIN Neuroethics Working Group (NEWG) recently organized the Workshop on Ethics of Sharing Individual Level Human Brain Data Collected in Biomedical Research. The workshop convened stakeholders from academia, government, industry, and nonprofit organizations, as well as research participant perspectives and advocates in a two-day hybrid event that took place on July 17 and July 18, 2023. The workshop goals were to explore meaningful ways to categorize human brain data by potential risks of data sharing and consider any resulting differences in how researchers should treat and use those data.
A summary(pdf, 560 KB) of the event is now available, providing the meeting overview and summaries of each of the five panel sessions—each including individual presentations followed by a moderated discussion. The workshop included five panel sessions discussing:
1) Data that is collected and stored by neurotechnologies and the inferences to be drawn from these data.
2) Inferences to be drawn from data and their implications for data sharing.
3) The potential risks to communities.
4) The potential risk to individuals of sharing human brain data.
5) Research participants’ perspectives on sharing human brain data.
Each panel session included a moderated discussion that focused on specific questions posed by meeting facilitators.
The second part of the meeting included breakout group discussions on strategies around potential safeguards to mitigate data sharing risks.