LEARNING SHORT: The NIH Genomic Data Sharing (GDS) Policy
If your human subjects research includes any genetic research and/or specimen banking, this Learning Short explains why you may wish to include the genomic data sharing language in the consent form from the beginning of your research. This helps ensure that you will avoid the possibility of re-consenting subjects in the future if your future research may be subject to the NIH Genomic Data Sharing Policy. This video also provides a brief overview of the NIH Genomic Data Sharing (GDS) Policy and will help you identify the resources about the GDS Policy in the iTHRIV Portal. If these resources do not fully answer all your questions please feel free to click on "Request a Consult" above.
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Resources:
NIH Genomic Data Sharing Policy for Human and Non-Human Data: Guidance for Institutions Submitting Grant Applications and Contract Proposals
National Institutes of Health Genomic Data Sharing Policy
For help with developing a Genomic Data Sharing Plan, please see National Institutes of Health Guidance for Investigators in Developing Genomic Data Sharing Plans
The NIH GDS website
Supplemental Information to the National Institutes of Health Genomic Data Sharing Policy
A slide presentation on the GDS policy
Genomic Data Sharing Policies Webinar held on Nov 21, 2020
The NIH Guidance on Consent for Future Research Use and Broad Sharing of Human Genomic and Phenotypic Data Subject to the NIH Genomic Data Sharing Policy
Institutional Certification
Curated information on the GDS Policy in the iTHRIV Portal