Yaniv Erlich, Ph.D., and his research team at the Whitehead Institute hoped to start a conversation when they published their study in Science showing that all they needed to identify nearly 50 individuals who had submitted personal genetic material for genomic studies was just a computer, an Internet connection, and publicly accessible online resources.
That conversation has raised many of the right questions when it comes to privacy of genetic information. Answers, however, remain elusive despite the study and other recent developments in addressing the issue of genetic privacy, including publication last fall of a report by the U.S. Presidential Commission for the Study of Bioethical Issues.
The commission’s report, Privacy and Progress in Whole Genome Sequencing, stressed that individual interests in privacy must be respected and secured to realize the promise of whole genome sequencing in advancing clinical care and the greater public good.
One key recommendation calls for Washington to join states in hammering out “a consistent floor of protections” ensuring security for whole-genome sequence data, rather than the limited approach of the Genetic Information Nondiscrimination Act...