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PRIM&R Comments on Draft NIH Policy for Data Management and Sharing

January 16, 2020 On November 8, 2019, the National Institutes of Health (NIH) released its Draft NIH Policy for Data Management and Sharing and Supplement Draft Guidance as part of its continuing efforts to ensure public access to information generated from government-funded research. On Friday, January 10, PRIM&R submitted comments applauding the NIH for taking steps to accelerate data sharing efforts while also offering a few constructive suggestions, primarily centered around privacy and funding issues. The proposed policy would require NIH-funded researchers to provide a comprehensive plan describing how scientific data will be managed and shared before the launch of a study. PRIM&R’s response centers around five key points.
  • We encourage the NIH to explicitly mandate that researchers share their data unless it determines that there are compelling ethical or scientific reasons not to do so.
  • Deidentification is not a viable privacy risk mitigation strategy given that it is no longer possible to guarantee that data will remain deidentified. At minimum, the NIH should communicate this fact to grantees, oversight bodies, and other relevant stakeholders.
  • PRIM&R suggests that the agency consider convening a technical review group that includes individuals who are independent from the NIH and its grant recipients, to augment and standardize the data security and privacy review conducted by individual program officers.
  • We suggest the agency offer specific guidance on the ethical issues involved in data sharing for the research oversight community.
  • Finally, PRIM&R urges NIH to address the fact that current budgetary allowances may be insufficient to cover increased institutional overhead that may accompany greater efforts to share data.
Download PRIM&R's Full Response

About PRIM&R

Since 1974, PRIM&R has advanced the highest ethical standards in the conduct of research. We accomplish this mission through education, membership services, professional certification, public policy initiatives, and community building. PRIM&R is a 501(c)3 nonprofit. Find out more at www.primr.org

Media Contact:

Daniel McLean Public Engagement Manager Public Responsibility in Medicine and Research (PRIM&R) Direct: 617-303-1877 dmclean@primr.org www.primr.org