title: 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.
authors.affiliation: a Stanford University.
authors.forename: Sandra
authors.initials: S
authors.lastname: Soo-Jin Lee
authors.forename: Emily
authors.initials: E
authors.lastname: Borgelt
mesh_terms: D003132:Commerce; D004651:Employment / Q000941:ethics / Q000331:legislation & jurisprudence / Q000592:standards / Q000639:trends; D030661:Genetic Privacy / Q000331:legislation & jurisprudence*; D005820:Genetic Testing / Q000941:ethics / Q000639:trends; D005838:Genotype; D006801:Humans; D033181:Information Dissemination / Q000941:ethics / Q000379:methods; D020407:Internet; D011287:Prejudice; D011640:Public Policy; D061108:Social Media; D060756:Social Networking; D014481:United States; D017132:Workplace / Q000331:legislation & jurisprudence
keywords: GINA; direct-to-consumer genetic testing; genetic testing; personal genomics; social media; social networking