Are the data included in the NIH GWAS data repository subject to the Freedom of Information Act (FOIA)?
As an agency of the Federal government, the NIH is required to release government records in response to requests under the federal Freedom of Information Act (FOIA), unless the records are exempt from release under one of the FOIA exemptions. The NIH believes that release of unredacted GWAS datasets in response to a FOIA request would constitute an unreasonable invasion of personal privacy under FOIA Exemption 6, 5 U.S.C. ยง 552 (b)(6). Therefore, among the safeguards that the NIH foresees using to preserve the privacy of research participants and the confidentiality of their genomic data in the NIH GWAS data repository is the redaction of individual-level genotype and phenotype data from any disclosures made in response to FOIA requests and the denial of requests for unredacted datasets. It is important to note, however, that FOIA affords requesters an opportunity to contest an agencies determination.
