Brain Research Through Advancing Innovative Neurotechnologies® (BRAIN) Initiative
Neuroethics Working Group (NEWG)
Workshop on Ethics of Sharing Individual Level Human Brain Data Collected in Biomedical Research
July 17 and 18, 2023
Limited availability at on-site location:
6701 Rockledge Drive
Bethesda, MD 20817
Data sharing accelerates scientific progress and maximizes the societal value of research, providing an ethical imperative to share data. The ethical considerations tied to the sharing of human brain data may be different than sharing other kinds of biomedical data. Indeed, sharing human research data may involve potential risks to participants or communities. NIH is committed to promoting responsible data sharing (NOT-OD-21-013). 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 NIH BRAIN Initiative is at the forefront of data sharing in neuroscience (see NOT-MH-19-010). As such, it also has an opportunity to carefully consider the ethical challenges involved, especially with the input of the BRAIN Neuroethics Working Group (NEWG), a group of experts in neuroethics and neuroscience.
The workshop aims to explore meaningful ways to categorize human brain data by potential risks of data sharing. Furthermore, any resulting differences in how to treat the data will be considered.