Family Ties: The Familial Privacy Implications of Direct to Consumer Genetic Testing

Abstract

Direct to consumer (DTC) genetic testing has recently become a popular trend in the United States. There are countless private actors that could have an interest in the genetic data that has been collected and interpreted by DTC genetic testing companies, such as 23andMe. For instance, what would happen if a private entity were to acquire this genetic information through mergers and acquisitions, contracts of adhesion, or a data breach? This expansive violation of privacy will not only directly affect those who have voluntarily provided online genetic testing sites with their genetic information, but blood relatives who inherently share similar DNA will be implicitly affected as well. Modern genomics now allows researchers to “fill in the blanks” of a family tree based on one family member’s genetic sequence. This article seeks to focus on civil remedies and regulatory protections regarding familial third parties' privacy implications in the event of the access, sharing, or disclosure of the contributing sample owner's genetic information. With the last landmark piece of federal legislation pertaining to genetic privacy being passed nearly 12 years ago, these relatives of the contributing sample owner may only be left with ineffective civil remedies for the nonconsensual use, obtention, and/or public disclosure of an appreciable amount of their genetic information. This Article tracks the evolution of DTC genetic testing and the vulnerability of the private and sensitive health information that has been acquired and analyzed for millions of consumers. It also highlights the feasibility and inadequacies of civil remedies for third party relatives in the event that their genetic information is implicitly shared as a result of the disclosure of the contributing owner's genetic sample.