Last month, members of the NIH BRAIN Initiative’s Neuroethics Working Group (NEWG) and Multi-Council Working Group (MCWG) discussed insights from a recent workshop on the ethics of data sharing, the progress and current state of the NIH BRAIN Initiative, and more.
On August 28, 2023, the BRAIN Initiative Neuroethics Working Group (NEWG) held its 16th meeting. The NEWG is a group of experts in neuroethics and neuroscience that promotes the integration of neuroethics in NIH BRAIN Initiative activities.
Dr. John Ngai, Director of the NIH BRAIN Initiative, thanked Dr. Elba Serrano for her service to NEWG and highlighted two recent BRAIN workshops: Next Frontiers in Consciousness Research and Patient Recruitment in Deep Brain Stimulation (DBS) Clinical Trials. Next, Dr. Jay Churchill, Senior Advisor to the Director at the National Institute of Mental Health (NIMH) and Co-Lead of the BRAIN Neuroethics Program Team, presented an overview of neuroethics projects the BRAIN Initiative has supported since 2017. These projects have covered a broad array of neuroethical topics, and many have engaged different stakeholder groups, including patients.
The development of pragmatic dissemination plans in the form of, for example, enhanced neuroethics frameworks to inform decision aids and the development of best practices, have been central to these projects. The NEWG was then challenged to consider what potential future neuroethics research issues might be prime for BRAIN to consider, including emerging topics, encouraging applications to cultivate the next generation of neuroethics researchers, consideration of stakeholder perspectives around data sharing (including cross-cultural perspectives), and identifying opportunities to facilitate interactions between ethicists and scientists. Next, Dr. Saskia Hendriks, Neuroethics Consultant at the National Institute of Neurological Disorders and Stroke (NINDS), presented a summary of the recent NEWG workshop titled “Ethics of Sharing Individual Level Human Brain Data Collected in Biomedical Research,” sharing brain data.
The meeting continued with presentations on informed consent protocols for use of brain data. Dr. Lucila Ohno-Machado, Yale University School of Medicine, presented the iCONCUR and iAGREE consent management systems, which allow patients to decide which of their data types can be shared and with whom. Dr. Christine Grady, Chief of the NIH Department of Bioethics and NEWG Co-Chair, presented on dynamic consent, which requires ongoing communication among study participants. Next, Dr. Amy McGuire, Baylor College of Medicine, presented a study of consent for genetic data sharing and its implications for brain studies, which found that each participant preferred different and individualized consent options. The meeting ended with roundtable updates moderated by Dr. Nita Farahany, NEWG Co-Chair. NEWG meeting summary(pdf, 226 KB)videocast
The next day, the Multi-Council Working Group (MCWG) held its 26th meeting to discuss updates on BRAIN Initiative programs and new scientific developments. Dr. Susan Weiss, Designated Federal Official of the MCWG, introduced Dr. Frank Longo as the new representative from the National Institute on Aging for the MCWG. Dr. John Ngai, Director of the NIH BRAIN Initiative and Chair of the MCWG, welcomed new staff and summarized the BRAIN project team structure and budget. Since 2014, the BRAIN Initiative has invested more than $3 billion to fund more than 1,300 projects. Dr. Ngai provided an overview of current BRAIN programs and associated funding opportunities. He also described several
The MCWG meeting continued with an update on NEWG activities from Dr. Grady and updates from the National Science Foundation (NSF) from Dr. Floh Thiels, NSF Program Director. Dr. Thiels described cross-cutting and new programs supporting brain science at NSF, including BioDesign, BioFoundries, Regional Innovations Engines, Convergence Accelerator, Collaborative Research in Computational Neuroscience, the Behavioral and Neural Systems programs, Biology Integration Institutes, and Integrative Research in Biology.
Want to stay updated on the latest BRAIN Initiative activities? Tune in to the next NEWG and MCWG meetings via NIH Videocast on February 12 and February 13, 2024, respectively!