NIH moves to share medical research data

April 1, 2002

Sharing medical research data benefits everyone: research radiologists, their funders, the broader research community, and -- most important -- the patient.Data sharing promotes open scientific inquiry, encouraging diversity of analysis and opinion. It

Sharing medical research data benefits everyone: research radiologists, their funders, the broader research community, and -- most important -- the patient.

Data sharing promotes open scientific inquiry, encouraging diversity of analysis and opinion. It stimulates additional research, tests alternative hypotheses, and combines data from multiple sources to create more comprehensive data sets.

For many years, the National Science Foundation (NSF) has required data related to NSF-supported research to be placed in a public archive. The American Psychological Association and the American Sociological Association have also made a strong commitment to the sharing and archiving of data through their ethical codes.

Now, the National Institutes of Health is incorporating data sharing in its policies and procedures. NIH is in the process of developing a new position on data sharing to apply to all researchers seeking grants, cooperative agreements, and contracts.

The pending statement is consistent with NIH's long-standing policy promoting open communication and sharing of research data and tools. It is expected to say that NIH now requires the timely release and sharing of final research data from all NIH-sponsored studies for use by other researchers. Investigators applying for NIH grant money will be required to include a plan for data sharing or to state specifically why data sharing is not possible.

The proposed mechanism would allow applicants to seek reimbursement for at least some of the costs for archiving and communication of data to be supported by the research grant.

The issue of data sharing within federally sponsored research has been raised several times outside of the scientific community, particularly in Congress. In 1998, for example, legislation amended the Office of Management and Budget (OMB) Circular A-110 (the so-called Shelby Amendment). That legislation required data from federally funded academic research to be made available to the public under the Freedom of Information Act, according to Stephen Heinig, of the Division of Biomedical & Health Sciences Research at the Association of American Medical Colleges.

NIH invites comments on its draft statement, which must be received no later than June 1, 2002. Once public comments and revisions are considered, it is expected the new policy will be announced on Aug. 1, 2002, to be effective Jan. 1, 2003.

Additional information is available online on the NIH Web site.