# BRAINShare: Sharing Data in BRAIN Initiative Studies

> **NIH NIH R01** · BAYLOR COLLEGE OF MEDICINE · 2022 · $430,889

## Abstract

PROJECT SUMMARY
Data sharing is essential to promote equity and maximize the impact of the significant investment in the BRAIN
Initiative. Data sharing plans are now required for BRAIN Initiative funding, but there is an urgent need to de-
velop specific policies and practice guidelines that address ethical challenges and stakeholder concerns. Data
sharing has been the object of study in other fields, such as genomics, but there are distinctive features of the
BRAIN Initiative that are likely to present unique challenges and raise new concerns. Our own experience and
research with investigators conducting BRAIN Initiative-funded studies of closed loop or adaptive deep brain
stimulation suggests that the practice of sharing data is inconsistent and incomplete, despite broad agreement
that it is important. Investigators raised ethical challenges with sharing human brain data, including issues re-
lated to privacy, consent, interoperability, and competing commercial and professional interests. The objective
of this proposal is to engage key stakeholders in a deliberative process to identify challenges and concerns
specific to sharing human data from BRAIN Initiative studies and generate empirically informed policy and
practice options to facilitate responsible sharing of human data within the BRAIN Initiative. In Aim 1, we will use
informational interviews and document analysis to identify BRAIN Initiative-specific data sharing challenges, as
well as relevant policy and practice considerations. In Aim 2, we will use semi-structured interviews and sur-
veys to evaluate BRAIN Initiative research participants’ attitudes, preferences, and concerns about data shar-
ing and brain privacy. In Aim 3, we will employ a modified policy Delphi process with diverse stakeholders to
prioritize challenges and generate and evaluate policy and practice options that address high-priority chal-
lenges. This contribution will be significant because it will provide critical empirical data to inform practice
guidelines and future policy development. By engaging diverse stakeholders, this project will help instill trust,
avoid inequities, and ensure success of current and future data sharing efforts within the BRAIN Initiative. This
project is innovative in its engagement with multiple diverse stakeholder groups and its use of mixed methods
incorporated into a modified policy Delphi framework. The work is feasible in our hands as demonstrated by
the productivity of this team in prior work, as well as our collective data sharing and neuroethics expertise, and
experience with empirical social science methods.

## Key facts

- **NIH application ID:** 10450824
- **Project number:** 5R01MH126937-02
- **Recipient organization:** BAYLOR COLLEGE OF MEDICINE
- **Principal Investigator:** Amy L McGuire
- **Activity code:** R01 (R01, R21, SBIR, etc.)
- **Funding institute:** NIH
- **Fiscal year:** 2022
- **Award amount:** $430,889
- **Award type:** 5
- **Project period:** 2021-07-15 → 2025-04-30

## Primary source

NIH RePORTER: https://reporter.nih.gov/project-details/10450824

## Citation

> US National Institutes of Health, RePORTER application 10450824, BRAINShare: Sharing Data in BRAIN Initiative Studies (5R01MH126937-02). Retrieved via AI Analytics 2026-05-24 from https://api.ai-analytics.org/grant/nih/10450824. Licensed CC0.

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