With the price of whole genome sequencing plummeting from billions of dollars to the coveted $1,000 mark, policy makers and identify theft experts are scurrying to set up safety nets for genetic privacy protection. Today (October 11), the Presidential Commission for the Study of Bioethics released a report that finds current laws and guidance lacking, but provides recommendations to better protect individuals going forward.
“This is a proactive and a forward looking report,” commission chair Amy Gutmann said in a press conference yesterday (October 10). “In order to make full use of whole genome sequencing, which holds enormous promise for human health and medicine, we’re going to have to figure out how to protect people’s privacy and avoid the misuse of this very personal data.”
Though the commission found suitable protections when whole genome sequencing is carried out by clinicians—who are subject to the Health Insurance Portability and Accountability Act (HIPAA)—it revealed inadequate protection of genetic privacy in commercial and research arenas, which are so far only subject to Common Rule or Institutional Review Boards. For instance, only about half of US states protect individuals against surreptitious commercial sequencing.
“In many states in the U.S., someone could legally pick up your discarded coffee cup, send a sample of your saliva out for sequencing to see if you show a predisposition for certain diseases,” Gutmann explained. Though the costs have been a barrier in the past to such activities—the first human genome sequencing cost around $2.5 billion—experts predict it will soon drop below $1,000, which may lead to a flood of commercial sequencing.
The commission’s recommendations to improve security include: having state and federal governments establish basic protections, such as outlawing genome sequencing done without consent and improving data security for databases that store genetic information; new models for the consent process; and new methods for integrating whole genome sequence data into health records.
“Any of us should be protected, no matter what state of the union we live in,” Gutmann said, emphasizing that the recommendations weren’t intended to limit genome sequencing, but rather to provide protection and foster trust, and thus participation, in research involving the technique.
“Trust is the key to amassing the large number of genomic data sets needed to make powerful life-saving discoveries,” the commission wrote in a statement.