Brainshare: sharing data in brain initiative studies
Ended Project Grant Awarded Last action
- Award ID
- R01MH126937
- Recipient
-
Baylor College Of Medicine UEI FXKMA43NTV21
- Awarding agency
-
National Institute of Mental Health
National Institutes of Health, Department of Health and Human Services
- Obligated
- $3,945,890
Award facts
- Assistance listing
- 93.242 Mental Health Research Grants
- Completion date
- Funding
-
- $3,618,430.00 Federal
- $327,460.00 Non-federal
- Place of performance
- Houston, TX 77030, USA
Award details come from USAspending.gov.
Description
- Abstract
- 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.
Transactions
| Action | Federal | Non-federal | Date |
|---|---|---|---|
| Amendment | $387,153 | $0 | |
| Amendment | $92,894 | $0 | |
| Amendment | $92,894 | $0 | |
| Amendment | $430,529 | $0 | |
| Amendment | $430,529 | $0 | |
| Amendment | $430,529 | $0 | |
| Amendment | $430,889 | $0 | |
| Amendment | $430,889 | $0 | |
| Amendment | $118,602 | $0 | |
| Amendment | -$118,602 | $0 | |
| Amendment | $118,602 | $0 | |
| Amendment | -$118,602 | -$118,602 | |
| Amendment | $446,062 | $0 | |
| Original award | $446,062 | $446,062 |
Show all 14
Subawards
| Subrecipient | Amount | Awarded |
|---|---|---|
| Arizona State University | $92,894 | |
| Centre National De La Recherche Scientifique | $351,015 | |
| President And Fellows Of Harvard College | $37,193 | |
| Arizona State University | $165,738 |
Quick answers
Who received award R01MH126937?
R01MH126937 was awarded to Baylor College Of Medicine by National Institute of Mental Health (National Institutes of Health) on July 15, 2021.
How much is award R01MH126937 worth?
$3,945,890 has been obligated on R01MH126937: $3,618,430 in federal funding and $327,460 in non-federal funding.
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