Are data within NDAR subject to a Freedom of Information Act (FOIA) request?
As an agency of the Federal Government, the NIH is required to release Government records in response to a request under the FOIA, unless they are exempt from release under one of the FOIA exemptions. Although NIH held data is coded and NIH does not hold direct identifiers to individuals within the NDAR Data Repository, the agency recognizes the personal and potentially sensitive nature of the genotype-phenotype data. Further, NIH takes the position that technologies available within the public domain today, and technological advances expected over the next few years, make the identification of specific individuals from raw genotype-phenotype data feasible and increasingly straightforward. The agency believes that the release of un-redacted NDAR datasets in response to a FOIA request would constitute an unreasonable invasion of personal privacy under FOIA Exemption 6, 5 U.S.C. 552 (b)(6). Therefore, among the safeguards that NIH foresees using to preserve the privacy of research partic
