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AAMC Comments on NIH’s Draft Genome Data Sharing Policy

November 22, 2013—The AAMC Nov. 20 submitted comments  on the National Institutes of Health (NIH)’s proposed genomic data sharing policy.  NIH published the draft policy in the Sept. 27 Federal Register, expressing intent to expand policies already in place for sharing data from genome wide association studies and certain other areas of genomic research.

In its comments, the AAMC strongly supports the intent of NIH to promote data sharing, noting:  “In the AAMCs view, the imperative for sharing such data will, if anything, grow stronger with time.  Increasingly, restricting access to data will be not be perceived as advantaging certain investigators, but rather will be seen only as an effective means to marginalize their research.”

The AAMC letter underscores the association’s past support for NIH data sharing policies, and more recently a directive from the White House Office of Science and Technology Policy calling for sharing of data and findings generated by federal research in general [see Washington Highlights, May 31].

In the letter, the AAMC also expresses concerns with the draft policy.  Since the policy would encourage broader use of data made available from individual studies, the AAMC recommends that a final policy make an explicit statement encouraging outreach and inclusion of diverse communities and populations in genomic research projects to help promulgate findings and health recommendations that better represent the populations as a whole.

Moreover, the AAMC notes that genomic data generated from research increasingly will be integrated with data from medical imaging, clinical records, environmental scans, sensors (including as applications on PDAs and smartphones), and many other sources.  Here again, the association recommends an explicit statement in a final policy encouraging such research, and to avoid providing barriers for such integration.

The AAMC letter also expresses concern that the proposed policy would set new requirements for consent in use of de-identified data. In general, the draft policy would create new administrative requirements for investigators and institutions that could be especially burdensome. The AAMC recommends that NIH better delineate specific requirements, and minimize some of the burden to investigators (such as requiring individual data sharing plans after a research project grant is awarded, and not in every application).

In conclusion, the AAMC requests that NIH revise the draft policy based on input from the scientists, institutions, and patient advocates, and to release the revised policy for further comment before finalizing.


Stephen Heinig
Director, Science Policy
Telephone: 202-828-0488

Heather Pierce, JD, MPH
Sr. Director, Science Policy & Regulatory Counsel
Telephone: 202-478-9926


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