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 geneti