Input on the Draft NIH Genomic Data Sharing Policy

Notice Number: NOT-OD-14-018

Key Dates
Release Date: November 7, 2013

Related Announcements
NOT-OD-13-119

Issued by
National Institutes of Health (NIH)

Purpose

Summary

The purpose of this Notice is to inform the scientific community that the 60-day public comment period for the NIH Draft Genomic Data Sharing Policy will end on November 20, 2013 (see http://grants.nih.gov/grants/guide/notice-files/NOT-OD-13-119.html). NIH strongly encourages the public to provide feedback on any aspect of the draft GDS Policy. 

Overview of the Policy

Advances in DNA sequencing and other high-throughput technologies as well as a steep drop in DNA sequencing costs have enabled NIH to fund research that generates greater volumes of genomic data. In light of these advances, the National Institutes of Health (NIH) reevaluated its data sharing expectations and in 2009 announced (http://grants.nih.gov/grants/guide/notice-files/NOT-HG-10-006.html) its intention to extend the current Policy for Sharing of Data Obtained in NIH Supported or Conducted Genome-Wide Association Studies (GWAS) to encompass data from a wider range of genomic research.

The draft Genomic Data Sharing Policy (GDS Policy) applies to all NIH-funded research that involves human and non-human genomic data produced by array-based or high-throughput sequencing technologies, such as GWAS, whole-genome, transcriptomic, epigenomic, and gene expression data, irrespective of the funding level and funding mechanism (i.e., grant, contract, or intramural support). NIH considers access to such data particularly important because of the opportunities to accelerate research through the power of combining large and information-rich datasets.

The draft GDS Policy describes the responsibilities of investigators and institutions for the submission of non-human and human genomic data to data repositories and the secondary research use of such data as well as expectations regarding intellectual property. When data sharing involves human data, the protection of research participant privacy and confidentiality is paramount, and the draft GDS Policy reflects NIH’s continued commitment to responsible data stewardship.  The draft GDS Policy, like the GWAS Policy, includes a number of provisions to assure the protection of human data.

The draft Policy can be found at http://grants.nih.gov/grants/guide/notice-files/NOT-OD-13-119.html.
Additional information is available at http://gds.nih.gov/.

Request for Comments

Comments on the draft Policy should be submitted by 11:59 p.m. EST on November 20, 2013, using any of the following methods:

Online: http://gds.nih.gov/survey.aspx
Fax: 301-496-9839
Mail/Hand delivery/Courier (for paper, disk, or CD–ROM submissions) to: Genomic Data Sharing Policy Team, Office of Science Policy, National Institutes of Health, 6705 Rockledge Drive, Suite 750, Bethesda, MD 20892.

Responding to the Request for Comments is voluntary.  Submitted comments are considered public information; do not include any information that you wish to remain private and confidential.  Comments in their entirety will be posted along with the submitter’s name and affiliation on the NIH GDS website after the public comment period closes.  Commenters will receive a confirmation acknowledging receipt of comments but will not receive individual feedback on any suggestions.  Please note that the Government will not pay for the use of any information contained in the response. 

Inquiries

Please direct all inquiries to:

Genomic Data Sharing Policy Team
Office of Science Policy
Telephone: 301-496-9838
Email: GDS@mail.nih.gov


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