Yaniv Erlich’s research on genomic privacy breaches making headlines

On Thursday, Whitehead Institute Fellow Yaniv Erlich reported on a significant vulnerability in the security of personal genetic information. His findings generated media coverage nationwide:

The New York Times
Web Hunt for DNA Sequences Leaves Privacy Compromised
By Gina Kolata, Published January 17, 2013

“The genetic data posted online seemed perfectly anonymous — strings of billions of DNA letters from more than 1,000 people. But all it took was some clever sleuthing on the Web for a genetics researcher to identify five people he randomly selected from the study group. Not only that, he found their entire families, even though the relatives had no part in the study — identifying nearly 50 people…” read full article

The Wall Street Journal
A Little Digging Unmasks DNA Donor Names
By Amy Dockser Marcus, Published January 17, 2013

“Genetic information stored anonymously in databases doesn’t always stay that way, a new study revealed, raising concern about how much privacy participants in research projects can expect in the Internet era…Tension has long existed between the need to share data to drive medical discoveries and the fact many people don’t want personal health information disclosed. The growing use of genetic sequencing makes this even more challenging because genetic data reveals information not only about an individual, but also about his or her relatives.” read full article

Boston Globe
Using simple tools, scientists show genetic privacy of research participants is at risk
By Carolyn Y. Johnson, Published January 17, 2013

“A team of Cambridge scientists reported Thursday that they used Internet searches and genealogy websites to discern the names of nearly 50 people who had anonymously provided genetic samples listed in a publicly-accessible research database, demonstrating that like credit card and bank account numbers, genetic information is vulnerable to hacking…” read full article

NPR News
Anonymity In Genetic Research Can Be Fleeting
All Things Considered, January 17, 2013

NBC News
Scientists demonstrate how hackers could unlock your genetic secrets
By Alan Boyle, Published January 17, 2013

“Researchers have shown that it’s possible to link your identity to supposedly secret genetic information about your predisposition to diseases, merely by analyzing family-tree databases and other publicly available information…The team’s study already has led to a tightening of security measures for federally sponsored genetic databases…” read full article

Privacy of Donated Genetic Data Pierced by Researchers
By Elizabeth Lopatto, Published January 17, 2013

“Men who donate DNA to public databases can readily be identified because their Y chromosomes can be traced along with their surnames, according to a study that may raise concerns about privacy in genetic research…Researchers led by the Whitehead Institute for Biomedical Research in Cambridge, Massachusetts, identified 50 people among male volunteers who had donated genetic data to studies such as the 1,000 Genomes Project…” read full article

USA Today
Gene detectives ID ‘anonymous’ men in registry
By Dan Vergano, Published January 17, 2013

“Scientific sleuths identified 12% of “anonymous” men in a genetics registry with publicly available genealogy records. The report raises privacy concerns in an era when more and more genetics data is becoming public…The registries contain the genomes, or full genetic profiles, of those who volunteered to have their genes analyzed. Since the completion of human genome efforts a decade ago, increasing amounts of such human gene maps have appeared in research registries, even as prices to complete them have fallen to a few thousand dollars…” read full article

Wired Magazine
Scientists Discover How to Identify People From ‘Anonymous’ Genomes
By Greg Miller, Published January 17, 2013

“Most people participate in genomic research because they hope the DNA they offer up will help scientists uncover the roots of human diversity and disease. They generally expect to remain anonymous. But they may not be…Researchers armed with little more than an internet connection identified nearly 50 people who participated in a large genomic study based on some of the participants’ genomes and other publicly accessible information…” read full article