Genetic Privacy

The last decade has brought many technological advances to genetic testing. Increasingly, genetic testing, which was previously reserved for clinical or medical settings, has made its way to other spaces. Most significantly, we are now seeing the re-introduction of genetic testing to the workplace. Although the Genetic Information Nondiscrimination Act (GINA), which became law in 2009, would seemingly prohibit genetic testing in the workplace, genetic testing, as part of workplace wellness programs, is lawful under the aegis of the Affordable Care Act (ACA). This poses a threat to genetic privacy in the workplace. While some, like the actor Angelina Jolie, who credits genetic testing with her choice to undergo a double mastectomy and oophorectomy after discovering she carried the BRCA mutated gene, and Chris Hemsworth, who stepped away from acting after genetic testing revealed his genetic propensity for Alzheimer's disease, see genetic testing as affording agency, others see any type of genetic testing as raising the specter of eugenics and genetic discrimination. Genetic data, which is unique, personal, and yet communal, stretches the limits of existing legal protections for workers' privacy. This Article offers an analysis of the legal history and challenges associated with genetic testing, especially in the workplace. The Article provides an overview of the limited state-bystate protections afforded to subjects of genetic testing as well as the scant national regulation of genetic testing companies. The Article then sets forth five legal policy recommendations for regulating genetic privacy in the workplace, such as (1) strengthening GINA to close loopholes; (2) guidance from the Equal Employment Opportunity Commission (EEOC) for when genetic discrimination could give rise to a claim under the Americans with Disabilities Act; (3) a recognition that consent to genetic testing under workplace wellness programs is "murky" and should be treated as limited consent; (4) expanding FDA oversight over genetic testing; and (5) the promulgation of more stringent rules for the protection of genetic data.