Genomic Data Sharing Policy

Broad data sharing promotes maximum public benefit from federally funded genomics research. NHGRI supports the broadest appropriate genomic data sharing with timely data release through widely accessible data repositories. These repositories may be open access (unrestricted) or, if more appropriate, controlled access.

Resources for NHGRI Intramural Staff
News
Events
Contacts

Principles and Applicability

Whenever possible, NHGRI strongly encourages studies involving human data to use data generated from sources with participant consent for unrestricted access or for General Research Uses through controlled access. Similarly, consent language should avoid restrictions on the types of users who may access the data. NHGRI acknowledges that this will not always be possible or appropriate. In addition, individual participants who do not consent to future use or broad data sharing may still participate in the primary study, if consistent with study design.

When the policy applies

NHGRI encourages sharing of all data types. However, at this time the NIH GDS Policy and NHGRI implementation plans apply particularly to single nucleotide polymorphism (SNP) array data, genome sequence data, transcriptomic data, epigenomic data, or other molecular data produced by array-based technologies or high-throughput sequencing technologies.

Data pertinent to the interpretation of genomic data — such as associated phenotype data (e.g., clinical information relevant to the disease under study), exposure data, and descriptive information (e.g., protocols or methodologies used) — are expected to be shared. All data sets should include the appropriate metadata to allow efficient sharing and integration with other data sets.

Projects that are subject to the GDS Policy

NHGRI finds value in and encourages the sharing of smaller project sizes that do not meet the definition of ‘large-scale’ according to the NIH guidance regarding scope of the GDS Policy. Investigators should consult with appropriate NHGRI Program Directors as early as possible to determine whether the GDS Policy applies to their research study. See the NHGRI Implementation of NIH Genomic Data Sharing Policy (NOT-HG-20-011 and NOT-HG-15-038) and NHGRI GDS Policy Data Standards for more information about NHGRI’s guiding principles and expectations for data sharing.

Principles and Applicability

Whenever possible, NHGRI strongly encourages studies involving human data to use data generated from sources with participant consent for unrestricted access or for General Research Uses through controlled access. Similarly, consent language should avoid restrictions on the types of users who may access the data. NHGRI acknowledges that this will not always be possible or appropriate. In addition, individual participants who do not consent to future use or broad data sharing may still participate in the primary study, if consistent with study design.

When the policy applies

NHGRI encourages sharing of all data types. However, at this time the NIH GDS Policy and NHGRI implementation plans apply particularly to single nucleotide polymorphism (SNP) array data, genome sequence data, transcriptomic data, epigenomic data, or other molecular data produced by array-based technologies or high-throughput sequencing technologies.

Data pertinent to the interpretation of genomic data — such as associated phenotype data (e.g., clinical information relevant to the disease under study), exposure data, and descriptive information (e.g., protocols or methodologies used) — are expected to be shared. All data sets should include the appropriate metadata to allow efficient sharing and integration with other data sets.

Projects that are subject to the GDS Policy

NHGRI finds value in and encourages the sharing of smaller project sizes that do not meet the definition of ‘large-scale’ according to the NIH guidance regarding scope of the GDS Policy. Investigators should consult with appropriate NHGRI Program Directors as early as possible to determine whether the GDS Policy applies to their research study. See the NHGRI Implementation of NIH Genomic Data Sharing Policy (NOT-HG-20-011 and NOT-HG-15-038) and NHGRI GDS Policy Data Standards for more information about NHGRI’s guiding principles and expectations for data sharing.

NHGRI GDS Policy Information & Resources

NHGRI GDS Policy Data Standards

Alternatives and Exceptions

Informed Consent for Genomic Data Sharing

Data Access

Data Submission

Frequently Asked Questions

Key Documents

*Requires NIH Login

NIH GDS Policy Resources

NHGRI supports and complies with all NIH data sharing policies. NHGRI provides information about its expectations for implementation of the NIH Genomic Data Sharing (GDS) Policy and provides links to additional informational resources below.

Background Information

Resources for NHGRI Intramural Staff

NHGRI intramural staff should refer to specific instructions for NHGRI forms and submitting plans on the NHGRI Intranet's Genomic Data Sharing Policy Resources page (requires NIH Log-in).

Resources for NHGRI Intramural Staff

NHGRI intramural staff should refer to specific instructions for NHGRI forms and submitting plans on the NHGRI Intranet's Genomic Data Sharing Policy Resources page (requires NIH Log-in).