Presidential Commission Seeks More Protection for Genetic Data

The falling cost of genomic sequencing could raise ethical dilemmas because advancements in genetic testing are moving faster than policies to protect privacy, according to a presidential commission.

“The life-saving potential of genome sequencing depends on gathering genetic information from many thousands (perhaps millions) of individuals, most of whom will not directly benefit from the research,” says Amy Gutmann, Ph.D., chair of the Presidential Commission for the Study of Bioethical Issues, in a new report. Those willing to share such information should be assured of appropriate confidentiality, she notes. But right now, they aren’t.

For instance, sequence information collected in a physician’s office is protected under HIPAA, but the same information collected during research is protected by the Common Rule that governs protection of research participants. “Moreover, in many states in the U.S., someone could legally pick up your discarded coffee cup and send a sample of your saliva out for sequencing to see if you show a predisposition for certain diseases,” Gutmann says. “The exact same data--arguably your most personal data--are treated differently depending on who took your sample to sequence your genome.”

For your consideration: Assessing Genetic Information Protections

Among other recommendations, the commission calls for establishing a consistent floor of privacy protections for whole genome sequence data regardless of how they were obtained, sharing best practices for keeping genomic data secure, developing consistent guidelines for informed consent forms, and facilitating secure exchange of information between genomic researchers and clinicians.

The commission’s report, “Privacy and Progress in Whole Genome Sequencing,” is available here.