Data Release and Access Principles and Policy

National Human Genome Research Institute

National Institutes of Health
U.S. Department of Health and Human Services


Data Release and Access Principles and Policy

The human genome, the common heritage of all humanity, is arguably the most valuable dataset the biomedical research community has ever known. It holds long-sought secrets of human development, physiology, and medicine.

The highest priority of the International Human Genome Sequencing Consortium is ensuring that sequencing data from the human genome is available to the world's scientists rapidly, freely and without restriction.

Since the sequencing phase of the Human Genome Project (HGP) began five years ago, all of the data generated by participants has been deposited in publicly available databases every 24 hours.

Translating the text of the human genome into practical applications that will alleviate suffering is one of the greatest challenges facing humankind. This mission will require the work of tens of thousands of scientists throughout the world. No scientist wanting to advance this cause should be denied the opportunity to do so for lack of access to raw genomic data. Delaying the release of either unfinished or finished genomic DNA sequence data serves no scientific or societal purpose.

Early Results

Free and unfettered access to raw sequence data has sparked an explosion of scientific discovery in both academia and industry - even before the sequence's final assembly and completion.

Policy Statements Relevant to the Release of and Access to Genomic Sequence Data

NHGRI/NIH

Determination of Exceptional Circumstances (DEC) under 35 USC 202(a)(ii) and 37 CFR 401.3(a)(2) and (e) for the NIH Full-Length cDNA Initiative Contract and its Subcontracts, Harold Varmus, M.D., as NIH Director, (16 November 1999)

NIH Principles and Guidelines for Sharing of Biomedical Research Resources [ott.od.nih.gov] (December 1999)

International Strategy Meetings on Human Genome Sequencing:

National Research Council

Mapping and Sequencing the Human Genome (1988)

Office of Technology Assessment

Mapping Our Genes - Genome Projects: How Big? How Fast? (April 1988)

Human Genome Organization (HUGO)

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Last Reviewed: March 9, 2012