All Categories

More than 25 million Americans have contributed genetic information to large databases, including those maintained by private companies, such as 23andMe and Ancestry.com, which promise insights into ancestry and identification of lost relatives. Unlike databases created by health systems and research organizations, these corporate compilations of personal information are subject to almost no government regulation, leaving data subjects with little recourse if their information is shared with third parties without their knowledge or consent. Unauthorized disclosures could lead to embarrassment and possible discrimination. It could also implicate relatives, who share genetic traits and are not even aware that information about them has been collected. This research developed a proposal for a new regulatory mechanism to protect the privacy of individuals whose genetic information is contained in these databases.

Join on Zoom