Personal genetic information vulnerable to hacking

that if, for example, your Uncle Dave submitted his DNA to a genetic genealogy database, you could be identified,” says Melissa Gymrek, a member of the Erlich lab and first author of the Science paper. “In fact, even your fourth cousin Patrick, whom you’ve never met, could identify you if his DNA is in the database, as long as he is paternally related to you.”

Aware of the sensitivity of his work, Erlich emphasizes that he has no intention of revealing the names of those identified, nor does he wish to see public sharing of genetic information curtailed.

“Our aim is to better illuminate the current status of identifiability of genetic data,” he says. “More knowledge empowers participants to weigh the risks and benefits and make more informed decisions when considering whether to share their own data. We also hope that this study will eventually result in better security algorithms, better policy guidelines, and better legislation to help mitigate some of the risks described.”

To that end, Erlich shared his findings with officials at the National Human Genome Research Institute (NHGRI) and NIGMS prior to publication. In response, NIGMS and NHGRI moved certain demographic information from the publicly-accessible portion the NIGMS cell repository to help reduce the risk of future breaches. In the same issue of Science in which the Erlich study appears, Judith H. Greenberg and Eric D. Green, the Directors of NIGMS and NHGRI, and colleagues author a perspective on this latest research in which they advocate for an examination of approaches to balance research participants’ privacy rights with the societal benefits to be realized from the sharing of biomedical research data.

“Yaniv’s work is a timely reminder that in this era in which massive amounts of genomic data are being generated rapidly and shared in the interest of scientific advancement, there is an increasing likelihood of privacy breaches,” says Whitehead Institute director David Page. “I’m delighted that, thanks to Yaniv’s overture to NIH, we at Whitehead Institute have the opportunity to join policymakers at NHGRI and elsewhere in what will be a critical, ongoing dialog about the importance of safeguarding data, of sharing data, and the implications of failure in either endeavor.”

This work was supported by the National Defense Science & Engineering Graduate Fellowship, the Edmond J. Safra Center for Bioinformatics at Tel-Aviv University, and a gift from James and Cathleen Stone.

— Read more in Melissa Gymrek et al., “Identifying Personal Genomes by Surname Inference,” Science 339, no. 6117 (18 January 2013): 321-24 (DOI: 10.1126/science.1229566)