Issues of Privacy and Access to Human Genome Data

CDT and Professor Melissa Goldstein of the George Washington University School of Public Health and Health Services jointly filed these comments with the Presidential Commission for the Study of Bioethical Issues on the privacy issues raised by access to human genome sequence data.

The comments noted the sensitivity of genetic data, and the special protections afforded such data under federal and state law.  The Commission is urged to ensure genetic information is protected by a framework of privacy and security policies based on fair information practices, instead of relying disproportionately on individual consent.  The comments also urged the Commission to explore how other privacy-focused, federal government initiatives could be leveraged to further protect genetic information while ensuring its availability for treatment and research purposes.

The comments specifically mention the health IT data segmentation initiative being conducted by HHS and the FTC’s recent recommendation that de-identified data be protected from re-identification (issued in its recent Report on Consumer Privacy).

The text of the Commission’s official Request for Comment can be found here.