BRAIN to host upcoming workshop on ethics of sharing human brain data

This hybrid workshop, taking place on July 17-18, will explore the inferences that can be made from human brain data and the potential risks of sharing human brain data, through panel presentations from researchers, ethicists, and research participants.

The BRAIN Neuroethics Working Group (NEWG) is a group of experts in neuroethics and neuroscience that serves to provide the NIH BRAIN Initiative with input relating to neuroethics. The NEWG is hosting an upcoming Workshop on Ethics of Sharing Individual Level Human Brain Data Collected in Biomedical Research. This workshop 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 a.m. ET – 5:00 p.m. ET on both days.

Data sharing accelerates scientific progress and maximizes the societal value of research, providing an ethical imperative to share data. Indeed, NIH is committed to promoting responsible data sharing (NOT-OD-21-013), and the NIH BRAIN Initiative is at the forefront of data sharing in neuroscience (see NOT-MH-19-010). 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.

This 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. Workshop topics and panelists include:

Panel 1: The data that is collected and stored by neurotechnologies and the inferences that can be made from these data

Speakers will discuss the inferences that can be drawn from shared data that are collected through neurotechnologies regularly used in BRAIN-funded studies with human participants. Speakers will cover functional magnetic resonance imaging (fMRI), electroencephalography (EEG), deep brain stimulation (DBS), structural brain imaging, and brain-computer interfaces (BCI).

Panel 2: Inferences to be drawn from data and their implications for data sharing

Speakers will discuss the inferences that can be drawn from shared data across technologies, including combining data types and collecting data through from implanted neurotechnologies. Furthermore, implications of the ability to decode semantic representations and effects of racially exclusionary practices in collecting and managing brain data on data sharing will be discussed.

Panel 3: The potential risks of sharing different types of human brain data

Speakers will discuss potential risks that can arise from sharing human brain data, including re-identification, potential risks to individuals, and potential risks to communities.

Panel 4: Research participants’ perspectives on sharing human brain data

Speakers will discuss research participants' perspectives on sharing human brain data, including presentations from individuals with lived experience of participating in neuroscience studies, as well as empirical work on research participants’ views on data sharing.

Workshop Details

More information, including the workshop agenda, can be found on the workshop website. Registering for the event (for virtual or in-person participation) will enable you to attend the workshop, engage with workshop speakers, and ensure that you can receive updates about the products emerging from the workshop. Due to limited capacity for those attending in person, please register early.

You can also watch live via NIH Videocast at the links below, which will be archived for later viewing as well:

To register for either in-person or virtual attendance, visit this registration page.

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black and white image of people working on laptops at a counter height table on stools at the annual BRAIN meeting