Privacy Concerns with Genetic Databases
Anonymous donors for the 100 Genome Project were identified by public genealogy records and gene sequencing tools. This is a window into the privacy risks of sharing genetic data. 12% of the anonymous donors were identified said Yaniv Erlich, a genetics researcher at the Whitehead Institute. Mr. Erlich’s group identified sequences on the Y chromosome of males and cross referenced with genealogy websites and Google searches to find a man’s surname and full identity. Multiple media outlets including the New York Times, Bloomberg News, USA Today and the Wall Street Journal reported the story. The identification of these donors highlights the tension between data sharing that can advance genetics research and privacy for both the individual donor and their family. The NIH reacted by tightening security of genetic databases.