Presidential commission recommends baseline rules for genetic info

Rapidly advancing availability and use of genetic data in medicine and security, according to a new presidential commission report, requires a baseline of rules to protect the information from unauthorized use.

The report, which was released on Oct. 11 by the Presidential Commission for the Study of Bioethical Issues, recommended "a consistent floor of privacy protections covering whole genome sequence data regardless of how they were obtained.” The protections aimed at the confidentiality of genetic information are necessary, said the commission, because of uneven state laws. In some states it is legal to pick up a discarded cup of coffee to gather genetic information, while in others it is prohibited.

With increasingly inexpensive technology capable of isolating an individual’s genetic code becoming more readily available, it said, the danger of privacy violations increases, even though the medical advances the technology drives are invaluable.

Policies, it said, should protect individual privacy by barring unauthorized whole genome sequencing without the consent of the individual from whom the sample came. The protections are aimed at both medical and security uses.

The report also took aim at the use of biometric information by security and law enforcement agencies. "Only in exceptional circumstances should entities such as law enforcement or defense and security have access to biospecimens or whole genome sequence data for non health-related purposes without consent," it said.

Privacy groups have been advocating for such protections. The Electronic Privacy Information Center (EPIC) had provided comments to the commission earlier this year, proposing new rules to protect data and limit law enforcement access to it.

“The Commission’s goal was to find the most feasible ways of reconciling the enormous medical potential of whole genome sequencing with the pressing privacy and data access issues raised by the rapid emergence of low-cost whole genome sequencing,” said Commission Chair Amy Gutmann, Ph.D. 

“Your genome sequenced at your doctor’s office would be the same as your genome sequenced during research,” Gutmann said.  “However, the sequence information collected in a doctor’s office is protected by the Health Insurance Portability and Accountability Act (HIPAA) and the sequence information collected during research is protected by what’s known as the Common Rule,” she said.

“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,” she added. “The exact same data – arguably your most personal data – are treated differently depending on who took your sample to sequence your genome. These are just a few discrepancies in public policy that can create confusion and uncertainty when it comes to understanding how to protect some of our most personal data. Confusion and uncertainty tend to erode trust, and trust is the key to amassing the large number of genomic data sets needed to make powerful life-saving discoveries.”