Protecting Posted Genes: Social Networking and the Limits of GINA

Abstract

The combination of decreased genotyping costs and prolific social media use is fueling a personal genetic testing industry in which consumers purchase and interact with genetic risk information online. Consumers and their genetic risk profiles are protected in some respects by the 2008 federal Genetic Information Nondiscrimination Act (GINA), which forbids the discriminatory use of genetic information by employers and health insurers; however, practical and technical limitations undermine its enforceability, given the everyday practices of online social networking and its impact on the workplace. In the Web 2.0 era, employers in most states can legally search about job candidates and employees online, probing social networking sites for personal information that might bear on hiring and employment decisions. We examine GINA's protections for online sharing of genetic information as well as its limitations, and propose policy recommendations to address current gaps that leave employees’ genetic information vulnerable in a Web-based world.

Keywords:

• GINA
• genetic testing
• personal genomics
• direct-to-consumer genetic testing
• social networking
• social media

Notes

1.  Although some social media experts such as boyd and Ellison argue for a preference of particular terminology—”social media,” “social networking sites,” “online social media,” etc.—the nuances of these definitional differences are beyond the scope of our analysis. They are most commonly treated as synonyms, however, and here we use the terms social media and social networking sites interchangeably.

2.  Although we prefer to cite peer-reviewed research, we found that at present most research on actual, real-time social networking usage is conducted and disseminated within industry. This makes sense in that marketers are vested in how people behave and interact online and require timely information on usage trends.

3.  The initial cost for a 23andMe kit was $999 when the company received TIME’S Invention of the Year Award in 2007. The downward trend in purchase price reflects in part the dramatic decline in the cost of genotyping over the past decade.

4.  Although the FDA action has discontinued 23andMe's marketing of its health-related genetic tests direct to consumer, the PGI remains available to consumers with the expansion of testing services from companies such as Counsyl, Invitae, Ubiome, and Knome.

5.  Prognostication methodology used to estimate SNOPA's low likelihood of passing is published on GovTrack's site in detail: http://www.govtrack.us/about/analysis#prognosis.

Additional information

Funding

Funding for this work was provided by the National Institutes of Health (NIH) 1R01HG005086-01 (PI: Sandra Soo Jin Lee, PhD). We also thank Ashwin Mudaliar for his insight and feedback on earlier versions of this work.