Genomic Data Sharing Expectations by NIH Institute & Center

The NIH Genomic Data Sharing (GDS) policy provides the basic framework for sharing genomic data generated from all NIH-funded research. However, individual NIH Institutes and Centers (IC) may have additional expectations or requirements for genomic data sharing as well. For each IC, note when baseline expectations apply as well as any additional IC-specific requirements. 

In addition to consulting the information below, we always recommend contacting a program officer to discuss the requirements for your research. See our Contacts & Help page.

Select an Institute or Center below to learn more.
Other data sharing policies may also apply to your research.
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Fogarty International Center (FIC)

Policy Applicability
  • GDS policy applies to all NIH-funded studies generating large scale human and non-human genomic data. See Does GDS Apply to My Research? for details.
  • Smaller scale projects are decided on an individual basis.

Consult with a Program Officer (Extramural) or Scientific Director (NIH Intramural) about applicability.

Informed Consent

Informed consent for broad sharing and future research use is expected for studies using data generated from cell lines created or clinical specimens collected after January 25, 2015. See About Institutional Certifications for details.

Sharing Plan Requirements

A sharing plan is required prior to the generation of data. See Developing Genomic Data Sharing Plans for instructions.

Data Submission & Release

Expectations for the types of data for submission and the timing of data release vary by data type. See Data Submission and Release Expectations for details.

National Center for Advancing Translational Sciences (NCATS)

Policy Applicability
  • GDS policy applies to all NIH-funded studies generating large scale human and non-human genomic data. See Does GDS Apply to My Research? for details.
  • Smaller scale projects are decided on an individual basis.

Consult with a Program Officer (Extramural) or Scientific Director (NIH Intramural) about applicability.

Informed Consent

Informed consent for broad sharing and future research use is expected for studies using data generated from cell lines created or clinical specimens collected after January 25, 2015. See About Institutional Certifications for details.

Sharing Plan Requirements

A sharing plan is required prior to the generation of data. See Developing Genomic Data Sharing Plans for instructions.

Data Submission & Release

Expectations for the types of data for submission and the timing of data release vary by data type. See Data Submission and Release Expectations for details.

National Center for Complementary and Integrative Health (NCCIH)

Policy Applicability
  • GDS policy applies to all NIH-funded studies generating large scale human and non-human genomic data. See Does GDS Apply to My Research? for details.
  • Smaller scale projects are decided on an individual basis.

Consult with a Program Officer (Extramural) or Scientific Director (NIH Intramural) about applicability.

Informed Consent

Informed consent for broad sharing and future research use is expected for studies using data generated from cell lines created or clinical specimens collected after January 25, 2015. See About Institutional Certifications for details.

Sharing Plan Requirements

A sharing plan is required prior to the generation of data. See Developing Genomic Data Sharing Plans for instructions.

Data Submission & Release

Expectations for the types of data for submission and the timing of data release vary by data type. See Data Submission and Release Expectations for details.

National Cancer Institute (NCI)

* denotes IC-specific expectation

Policy Applicability
  • GDS policy applies to all NIH-funded studies generating large scale human and non-human genomic data. See Does GDS Apply to My Research? for details.
  • Smaller scale projects are decided on an individual basis.

Consult with a Program Officer (Extramural) or Scientific Director (NIH Intramural) about applicability.

Informed Consent

Informed consent for broad sharing and future research use is expected for studies using data generated from cell lines created or clinical specimens collected after January 25, 2015. See About Institutional Certifications for details.

Sharing Plan Requirements

A DMS plan is required prior to the generation of data due to harmonization of the DMS Policy with the Genomic Data Sharing Policy. See Developing Data Sharing Plans (One Plan) for instructions.

Data Submission & Release

Expectations for the types of data for submission and the timing of data release vary by data type. See Data Submission and Release Expectations for details.

National Eye Institute (NEI)

Policy Applicability
  • GDS policy applies to all NIH-funded studies generating large scale human and non-human genomic data. See Does GDS Apply to My Research? for details.
  • Smaller scale projects are decided on an individual basis.
Informed Consent

Informed consent for broad sharing and future research use is expected for studies using data generated from cell lines created or clinical specimens collected after January 25, 2015. See About Institutional Certifications for details.

Sharing Plan Requirements

A sharing plan is required prior to the generation of data. See Developing Genomic Data Sharing Plans for instructions.

Data Submission & Release

Expectations for the types of data for submission and the timing of data release vary by data type. See Data Submission and Release Expectations for details.

National Human Genome Research Insitute (NHGRI)

* denotes IC-specific expectation

Policy Applicability
  • * NHGRI requires data for all NHGRI-funded human genetics and genomics studies to be available for sharing regardless of number of participants.
  • GDS policy also applies to all NIH-funded studies generating large scale non-human genomic data. See Does GDS Apply to My Research? for details.
  • Consult with a Program Officer (Extramural), Scientific Director (NIH Intramural), or genomic program administrator about applicability.
Informed Consent

* Regardless of date of collection, NHGRI expects explicit consent for future research use and broad data sharing, or an NHGRI-approved exception request if explicit consent was not obtained from participants.

Sharing Plan Requirements

A sharing plan is required prior to the generation of data. See Developing Genomic Data Sharing Plans for instructions.

* NHGRI has its own GDS plan templates as well as a form to request an alternative GDS plan.

Data Submission & Release

* Expectations for the types of data for submission and the timing of data release vary by data type. See the NHGRI GDS site for details.

National Heart, Lung, and Blood Institute (NHLBI)

* denotes IC-specific expectation

Policy Applicability
  • GDS policy applies to all NIH-funded studies generating large scale human and non-human genomic data. See Does GDS Apply to My Research? for details.
  • Smaller scale projects are decided on an individual basis.

Consult with a Program Officer (Extramural) or Scientific Director (NIH Intramural) about applicability.

Informed Consent

Informed consent for broad sharing and future research use is expected for studies using data generated from cell lines created or clinical specimens collected after January 25, 2015. See About Institutional Certifications for details.

Details and timeline of data that would be shared be included in the sharing plan prior to award

Sharing Plan Requirements

A sharing plan is required prior to the generation of data. See Developing Genomic Data Sharing Plans for instructions.

* NHLBI has its own GDS plan template and Data Submission Information forms (extramural and intramural). Contact the NHLBI Genomic Program Administrator to request the templates.

Data Submission & Release

Expectations for the types of data for submission and the timing of data release vary by data type. See Data Submission and Release Expectations for details.

National Institute of Aging (NIA)

* denotes IC-specific expectation

Policy Applicability
  • GDS policy applies to all NIH-funded studies generating large scale human and non-human genomic data. See Does GDS Apply to My Research? for details.
  • Smaller scale projects are decided on an individual basis.

Consult with a Program Officer (Extramural) or Scientific Director (NIH Intramural) about applicability.

Informed Consent

Informed consent for broad sharing and future research use is expected for studies using data generated from cell lines created or clinical specimens collected after January 25, 2015. See About Institutional Certifications for details.

Sharing Plan Requirements

A sharing plan is required prior to the generation of data. See Developing Genomic Data Sharing Plans for instructions.

Data Submission & Release

Expectations for the types of data for submission and the timing of data release vary by data type. See Data Submission and Release Expectations for details.

NIA expects:
  1. * Biological and phenotypic data are to be deposited at NCRAD (National Cell Repository for Alzheimer's Disease)
  2. * Genomic Data derived from NIA funded studies for the genomics of late onset Alzheimer's disease, including secondary analysis data, be deposited at the NIA's central genomic data repository, NIAGADS, or another NIA approved site or both whenever possible.

National Institute of Alcohol Abuse and Alcoholism (NIAAA)

Policy Applicability
  • GDS policy applies to all NIH-funded studies generating large scale human and non-human genomic data. See Does GDS Apply to My Research? for details.
  • Smaller scale projects are decided on an individual basis.

Consult with a Program Officer (Extramural) or Scientific Director (NIH Intramural) about applicability.

Informed Consent

Informed consent for broad sharing and future research use is expected for studies using data generated from cell lines created or clinical specimens collected after January 25, 2015. See About Institutional Certifications for details.

Sharing Plan Requirements

A sharing plan is required prior to the generation of data. See Developing Genomic Data Sharing Plans for instructions.

Data Submission & Release

Expectations for the types of data for submission and the timing of data release vary by data type. See Data Submission and Release Expectations for details.

National Institute of Allergy and Infectious Diseases (NIAID)

Policy Applicability
  • GDS policy applies to all NIH-funded studies generating large scale human and non-human genomic data. See Does GDS Apply to My Research? for details.
  • Smaller scale projects are decided on an individual basis.

Consult with a Program Officer (Extramural) or Scientific Director (NIH Intramural) about applicability.

Informed Consent

Informed consent for broad sharing and future research use is expected for studies using data generated from cell lines created or clinical specimens collected after January 25, 2015. See About Institutional Certifications for details.

Sharing Plan Requirements

A sharing plan is required prior to the generation of data. See Developing Genomic Data Sharing Plans for instructions.

Data Submission & Release

Expectations for the types of data for submission and the timing of data release vary by data type. See Data Submission and Release Expectations for details.

National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS)

Policy Applicability
  • GDS policy applies to all NIH-funded studies generating large scale human and non-human genomic data. See Does GDS Apply to My Research? for details.
  • Smaller scale projects are decided on an individual basis.

Consult with a Program Officer (Extramural) or Scientific Director (NIH Intramural) about applicability.

Informed Consent

Informed consent for broad sharing and future research use is expected for studies using data generated from cell lines created or clinical specimens collected after January 25, 2015. See About Institutional Certifications for details.

Sharing Plan Requirements

A sharing plan is required prior to the generation of data. See Developing Genomic Data Sharing Plans for instructions.

Data Submission & Release

Expectations for the types of data for submission and the timing of data release vary by data type. See Data Submission and Release Expectations for details.

National Institute of Biomedical Imaging and Bioengineering (NIBIB)

Policy Applicability
  • GDS policy applies to all NIH-funded studies generating large scale human and non-human genomic data. See Does GDS Apply to My Research? for details.
  • Smaller scale projects are decided on an individual basis.

Consult with a Program Officer (Extramural) or Scientific Director (NIH Intramural) about applicability.

Informed Consent

Informed consent for broad sharing and future research use is expected for studies using data generated from cell lines created or clinical specimens collected after January 25, 2015. See About Institutional Certifications for details.

Sharing Plan Requirements

A sharing plan is required prior to the generation of data. See Developing Genomic Data Sharing Plans for instructions.

Data Submission & Release

Expectations for the types of data for submission and the timing of data release vary by data type. See Data Submission and Release Expectations for details.

Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD)

* denotes IC-specific expectation

Policy Applicability
  • GDS policy applies to all NIH-funded studies generating large scale human and non-human genomic data. See Does GDS Apply to My Research? for details.
  • Smaller scale projects are decided on an individual basis.

Consult with a Program Officer (Extramural) or Scientific Director (NIH Intramural) about applicability.

Informed Consent

Informed consent for broad sharing and future research use is expected for studies using data generated from cell lines created or clinical specimens collected after January 25, 2015. See About Institutional Certifications for details.

* Data use limitations should be based on the consent form or the IRB's determination. Highly restricted datasets (i.e., IRB approval, required collaboration or prior approval by the data depositor) will require an adequate explanation.

Sharing Plan Requirements

A sharing plan is required prior to the generation of data. See Developing Genomic Data Sharing Plans for instructions.

Data Submission & Release

Expectations for the types of data for submission and the timing of data release vary by data type. See Data Submission and Release Expectations for details.

National Institute on Drug Abuse (NIDA)

* denotes IC-specific expectation

Policy Applicability
  • GDS policy applies to all NIH-funded studies generating large scale human and non-human genomic data. See Does GDS Apply to My Research? for details.
  • Smaller scale projects are decided on an individual basis.

Consult with a Program Officer (Extramural) or Scientific Director (NIH Intramural) about applicability.

Informed Consent

Informed consent for broad sharing and future research use is expected for studies using data generated from cell lines created or clinical specimens collected after January 25, 2015. See About Institutional Certifications for details.

Sharing Plan Requirements

A sharing plan is required prior to the generation of data. See Developing Genomic Data Sharing Plans for instructions.

* The use of DOIs for any data set generated is expected. In addition, Resource Identifiers are expected to be used and associated with any biological resource created.

Data Submission & Release

Expectations for the types of data for submission and the timing of data release vary by data type, or upon publication, whichever comes first. See Data Submission and Release Expectations for details.

National Institute on Deafness and Other Communication Disorders (NIDCD)

* denotes IC-specific expectation

Policy Applicability
  • GDS policy applies to all NIH-funded studies generating large scale human and non-human genomic data. See Does GDS Apply to My Research? for details.
  • Smaller scale projects are decided on an individual basis.

Consult with a Program Officer (Extramural) or Scientific Director (NIH Intramural) about applicability.

Informed Consent

Informed consent for broad sharing and future research use is expected for studies using data generated from cell lines created or clinical specimens collected after January 25, 2015. See About Institutional Certifications for details.

Sharing Plan Requirements

A sharing plan is required prior to the generation of data. See Developing Genomic Data Sharing Plans for instructions.

Data Submission & Release

* NIDCD expects all genomic or transcriptomic data deriving from both non-human and human subjects to be deposited in a public database repository at the time of publication. NIDCD also expects that human genomic data will be released in a manner consistent with the relevant consent form.

National Institute of Dental and Craniofacial Research (NIDCR)

* denotes IC-specific expectation

Policy Applicability

* NIDCR applies the GDS policy to the following experiments, regardless of the number of specimens or participants:

  • * Human studies of rare diseases.
  • * The oral microbiome (archea, bacteria, viruses, and fungi).
  • * Under-studied human populations.
  • * Specific diseases or disorders: Human studies of Sjögren's Syndrome/xerostomia, or Temporomandibular Joint Disorder or related pain conditions.

For all other research areas:

  • GDS policy applies to all NIH-funded studies generating large scale human and non-human genomic data. See Does GDS Apply to My Research? for details.
  • Smaller scale projects are decided on an individual basis.
Informed Consent

Informed consent for broad sharing and future research use is expected for studies using data generated from cell lines created or clinical specimens collected after January 25, 2015. See About Institutional Certifications for details.

Sharing Plan Requirements

A sharing plan is required prior to the generation of data. See Developing Genomic Data Sharing Plans for instructions.

Data Submission & Release

Expectations for the types of data for submission and the timing of data release vary by data type. See Data Submission and Release Expectations for details.

National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK)

Policy Applicability
  • GDS policy applies to all NIH-funded studies generating large scale human and non-human genomic data. See Does GDS Apply to My Research? for details.
  • Smaller scale projects are decided on an individual basis.

Consult with a Program Officer (Extramural) or Scientific Director (NIH Intramural) about applicability.

Informed Consent

Informed consent for broad sharing and future research use is expected for studies using data generated from cell lines created or clinical specimens collected after January 25, 2015. See About Institutional Certifications for details.

Sharing Plan Requirements

A sharing plan is required prior to the generation of data. See Developing Genomic Data Sharing Plans for instructions.

Data Submission & Release

Expectations for the types of data for submission and the timing of data release vary by data type. See Data Submission and Release Expectations for details.

National Institute of Environmental Health Sciences (NIEHS)

* denotes IC-specific expectation

Policy Applicability

* NIEHS expects all human genomic experiments that have the proper consent to be shared, regardless of the number of specimens or participants.

  • GDS policy applies to all NIH-funded studies generating large scale human and non-human genomic data. See Does GDS Apply to My Research? for details.
  • Smaller scale projects are decided on an individual basis.

* Consult with a Program Officer (NIEHS Extramural) or Scientific Director and GPA (NIEHS Intramural) about applicability.

Informed Consent

Informed consent for broad sharing and future research use is expected for studies using data generated from cell lines created or clinical specimens collected after January 25, 2015. See About Institutional Certifications for details.

Sharing Plan Requirements

A sharing plan is required prior to the generation of data defined by size and types of study. See Developing Genomic Data Sharing Plans for instructions.

Data Submission & Release

Expectations for the types of data for submission and the timing of data release vary by data type. See Data Submission and Release Expectations for details.

National Institute of General Medical Sciences (NIGMS)

* denotes IC-specific expectation

Policy Applicability
  • GDS policy applies to all NIH-funded studies generating large scale human and non-human genomic data. See Does GDS Apply to My Research? for details.
  • Smaller scale projects are decided on an individual basis.

Consult with a Program Officer (Extramural) or Scientific Director (NIH Intramural) about applicability.

Informed Consent

Informed consent for broad sharing and future research use is expected for studies using data generated from cell lines created or clinical specimens collected after January 25, 2015. See About Institutional Certifications for details.

Sharing Plan Requirements

A sharing plan is required prior to the generation of data. See Developing Genomic Data Sharing Plans for instructions.

Data Submission & Release

Expectations for the types of data for submission and the timing of data release vary by data type. See Data Submission and Release Expectations for details.

National Institute of Mental Health (NIMH)

* denotes IC-specific expectation

Policy Applicability
  • GDS policy applies to all NIH-funded studies generating large scale human and non-human genomic data. See Does GDS Apply to My Research? for details.
  • Smaller scale projects are decided on an individual basis.

Consult with a Program Officer (Extramural) or Scientific Director (NIH Intramural) about applicability.

Informed Consent

Informed consent for broad sharing and future research use is expected for studies using data generated from cell lines created or clinical specimens collected after January 25, 2015. See About Institutional Certifications for details.

* NIMH expects these additional points to be considered in issues of consent.

Sharing Plan Requirements

A sharing plan is required prior to the generation of data. See Developing Genomic Data Sharing Plans for instructions.

* NIMH expects data sharing plans to also include a description of the standard(s) and/or data dictionaries that will be used to describe the data set, as well as a proposed schedule to validate that the data are compliant with the data dictionary that is being used.

* NIMH has certain requirements for these standards; applicants should review NIMH’s data sharing policy.

Data Submission & Release

Expectations for the types of data for submission and the timing of data release vary by data type. See Data Submission and Release Expectations for details.

* NIMH expects genomic data to be deposited at the NIMH Data Archive (NDA) unless NIMH agrees to a different database.

* All data associated with new projects at the NIMH Repository and Genomics resource will also be deposited in the NDA.

National Institute on Minority Health and Health Disparities (NIMHD)

Policy Applicability
  • GDS policy applies to all NIH-funded studies generating large scale human and non-human genomic data. See Does GDS Apply to My Research? for details.
  • Smaller scale projects are decided on an individual basis.

Consult with a Program Officer (Extramural) or Scientific Director (NIH Intramural) about applicability.

Informed Consent

Informed consent for broad sharing and future research use is expected for studies using data generated from cell lines created or clinical specimens collected after January 25, 2015. See About Institutional Certifications for details.

Sharing Plan Requirements

A sharing plan is required prior to the generation of data. See Developing Genomic Data Sharing Plans for instructions.

Data Submission & Release

Expectations for the types of data for submission and the timing of data release vary by data type. See Data Submission and Release Expectations for details.

National Institute of Neurological Disorders and Stroke (NINDS)

Policy Applicability
  • GDS policy applies to all NIH-funded studies generating large scale human and non-human genomic data. See Does GDS Apply to My Research? for details.
  • Smaller scale projects are decided on an individual basis.

Consult with a Program Officer (Extramural) or Scientific Director (NIH Intramural) about applicability.

Informed Consent

Informed consent for broad sharing and future research use is expected for studies using data generated from cell lines created or clinical specimens collected after January 25, 2015. See About Institutional Certifications for details.

Sharing Plan Requirements

A sharing plan is required prior to the generation of data. See Developing Genomic Data Sharing Plans for instructions.

Data Submission & Release

Expectations for the types of data for submission and the timing of data release vary by data type. See Data Submission and Release Expectations for details.

National Library of Medicine (NLM)

Policy Applicability
  • GDS policy applies to all NIH-funded studies generating large scale human and non-human genomic data. See Does GDS Apply to My Research? for details.
  • Smaller scale projects are decided on an individual basis.

Consult with a Program Officer (Extramural) or Scientific Director (NIH Intramural) about applicability.

Informed Consent

Informed consent for broad sharing and future research use is expected for studies using data generated from cell lines created or clinical specimens collected after January 25, 2015. See About Institutional Certifications for details.

Sharing Plan Requirements

A sharing plan is required prior to the generation of data. See Developing Genomic Data Sharing Plans for instructions.

Data Submission & Release

Expectations for the types of data for submission and the timing of data release vary by data type. See Data Submission and Release Expectations for details.