Overview Edit

[The National Institutes of Health (NIH) believes that data sharing is essential for expedited translation of research results into knowledge, products, and procedures to improve human health. NIH endorses the sharing of final research data to serve these and other important scientific goals and expects and supports the timely release and sharing of final research data from NIH-supported studies for use by other researchers. "Timely release and sharing" is defined as no later than the acceptance for publication of the main findings from the final data set. Effective with the October 1, 2003 receipt date, investigators submitting an NIH application seeking $500,000 or more in direct costs in any single budget period are expected to include a plan for data sharing or state why data sharing is not possible.

NIH recognizes that data sharing may be complicated or limited, in some cases, by organizational policies, local IRB rules, and local, State and Federal laws and regulations, including the "Privacy Rule."[1] The rights and privacy of individuals who participate in NIH-sponsored research must be protected at all times. Thus, data intended for broader use should be free of identifiers that would permit linkages to individual research participants and variables that could lead to deductive disclosure of the identity of individual subjects.[2]

References Edit

  1. See "Public Policy Requirements and Objectives—Requirements Affecting the Rights and Welfare of Individuals as Research Subjects, Patients, or Recipients of Services—Confidentiality—Standards for Privacy of Individually Identifiable Health Information") (full-text).
  2. "NIH Grants Policy Statement" (full-text).

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