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.The authors state -
In 2006, TIME Magazine made the surprise announcement that its “Person of the Year” award would go to “You” (Grossman 2006). Heralding the arrival of Web 2.0, TIME reveled in the unprecedented ease of connecting “citizen to citizen” and the productive potential of sharing information online. Two years later, TIME bestowed its “Invention of the Year” award onto the direct-to-consumer (DTC) personal genetic test kit offered by startup company 23andMe, predicting it would “transform not only how we take care of ourselves but also what we mean by personal information” (Hamilton 2008). And in 2010, Mark Zuckerberg, founder and chief executive officer (CEO) of Facebook, became TIME's “Person of the Year” for transforming “the way human beings relate to one another on a species-wide scale” (Grossman 2010). The 21st century ushered in a new era of ubiquitous online connectivity and sharing with social networking portals such as Facebook, LinkedIn, and Twitter that are now embedded into the daily rituals of more than a billion users across the globe — an experience expanding to even areas of limited Internet connectivity through partnerships between social media and mobile device conglomerates (Goel 2013). At the same time, an explosion in genetic research has allowed greater access to personal genetic information (PGI) than ever before and online platforms have emerged to facilitate PGI-based social networking. With new norms for personal information exchange and the proliferation of consumer tools for Web-based health and PGI management, the existing regulatory protections of PGI online demand a careful, pragmatic consideration that has been missing from discussions about personal genetic testing.
In 2008, federal legislation entitled the Genetic Information Nondiscrimination Act (GINA) outlawed discrimination, harassment, or retaliation on the basis of genetic information in employment and health insurance decisions (Pub.L. 110–233, 122 Stat. 881). Here, we focus on the protections stipulated in Title II of GINA (§201–213), which prevents employers, health insurers, labor groups, training programs, and employment agencies from requesting or purchasing protected information from employees and job candidates. While protections took effect in 2009 following GINA's 2008 passage, the final federal regulations implementing Title II were issued in November 2010 and included provisions for social networking in its regulations about acquisition of genetic information, exceptions for inadvertent acquisition, and permissions (29 CFR 1635). In the context of social networking sites, websites, blogs, and the like, the regulations disallow intentional acquisition of genetic information unless it is acquired inadvertently, not sought on sites where it is likely to be, and/or the employee or candidate grants the employer permission to access the information. These regulations raise practical and ethical issues, which we examine in detail below. On- and offline, GINA protects genetic information defined as “(i) such individual's genetic tests, (ii) the genetic tests of family members of such individual, and (iii) the manifestation of a disease or disorder in family members of such individual” (Pub.L. 110–233, §201, 122 Stat. 881). The definition of genetic information also includes records of activities such as requesting or receiving genetic services and participating in clinical research. Protected genetic information is defined broadly by the statute and includes data collected from genetic tests pertaining to an individual or related family members and family medical history; the latter is included as a proxy for traditional genetic information because it can be used to determine inherited risk for certain health conditions. As such, genetic information encompasses a broad swath of data that can be used to discern genetic predisposition or health risk.
Per GINA, genetic information extends beyond common understandings of what is genetic, and has far-reaching implications for social networking, sharing, privacy, and protection of such online. All 50 states and the District of Columbia have passed laws that coincide with GINA in some capacity. Legislation at the state level, in many cases, preceded GINA and afforded similar protections. Some state laws attempt additional protections, for example, against discrimination in the domains of life and disability insurance, housing, or education, even though these do not all necessarily extend enforceable protections significantly beyond the purview of GINA (National Human Genome Research Institute [NHGRI] 2013a). To date, no state actions directly protect employees against discrimination from genetic information collected through Web-based social networks.
Given the nature of social connectivity and the recent pathways for individuals to obtain PGI, it is timely that GINA addresses the need for employee protection from accessing and using genetic information in employment-related decisions. The federal regulations acknowledge the need to negotiate tension between commenting groups that either championed employer exemption protection in accessing social media sites of employees or advocated for maximizing user protections online:
In general, civil rights groups and groups promoting genetic research, as well as others, indicated that excepted sources should be limited to widely available media with no heightened risk for containing genetic information, providing a variety of arguments in support of this position. See Comments of ACLU, APA, CGF, FDIC, GPPC, Genetic Alliance, LCCR, Members of PGEP, and World Privacy Forum. Several of these groups also noted that employers who access commercially and publicly available materials with a specific intent of searching for genetic information should not be permitted to take advantage of the exception. See Comments of CGF, FDIC, GPPC, Genetic Alliance, LCCR and World Privacy Forum. Employers and employer groups, on the other hand, maintained that media formats such as personal web pages, social networking sites, and blogs should be part of the exception arguing, among other things, that such sources are publicly available and that employers have legitimate reasons to access them. (Federal Register 2010, 29 CFR 1635.1)
Although the final rule provides forward-thinking provisions for the protection of genetic information acquired through online spaces and social networking media, the practical challenges of GINA in providing protections for employees and job candidates remain uncharted in the literature. Serious challenges include the blurring boundary between professional and personal networks and the dual use of mobile devices—for example, smartphones, tablets, and portable computers—for both business and private purposes. GINA specifies narrow exceptions to its prohibition of the collection of employee/candidate genetic information, granting employers reprieve from liability in circumstances such as inadvertent acquisition. It is, in all cases, illegal for employers to use genetic information in a manner that could be construed to be discriminatory or retaliatory. However, the public nature of social networking combined with the surreptitious nature of Web-based surveillance creates a climate in which an apparently wronged party may have tremendous difficulty meeting the burden of proof required for recourse if genetic information were obtained via social media.
In 2009 Lee and Crawley discussed how increasing social connectivity around PGI demands empirical investigation and careful consideration of the social and ethical implications for this new mode of biosociality. Here we address an issue that flows out of our findings, published elsewhere (Lee 2013a; Lee 2013b; Lee 2014; Lee et al. 2013; Vernez et al. 2012), from an in-depth qualitative study of social networking and direct-to-consumer (DTC) personal genomics. Our interviews and focus groups with consumers of DTC personal genomics company 23andMe, Inc., described extensive, dynamic sharing practices both on- and offline. Many of these consumers cited, in relationship to other motivations, a comfort in sharing and social networking due to the belief that GINA offers sufficient and broad protection from discrimination, even online. Most attention and controversy surrounding personal genetic testing have revolved around the practice of DTC testing, our study included. Indeed, this is one—increasing popular—avenue for access to personal genetic information, and, as a formidable contributor to the problems we raise here, we consider its connection to social media. However, the issue of limited protections for genetic discrimination online extends well beyond the realm of DTC genetic testing. Given the broad definition of genetic information laid out in GINA, it also includes posting information about health or family history, family members’ past or ongoing health issues, personal ancestry information with health implications, and even sharing personal motivations for involvement in disease communities or research efforts. Thus, we examine GINA's provisions for online activity in the current mobile, Web-based culture of sharing and social networking; in doing so, we identify points of ambiguity, practical and technical limitations, and shortcomings of enforceability that require renewed regulatory attention and recourse, to fully realize the spirit of GINA's protections for the throngs of social media users who otherwise may be inadequately protected against genetic discrimination.