Protecting privacy to prevent discrimination.

• Author: Roberts, Jessica L.
• Position: II. The Privacy/Antidiscrimination Symbiosis in Action B. GINA as Symbiotic Legislation through Conclusion, with footnotes, p. 2132-2174

2. GINA as Symbiotic Legislation

   The legal protection of genetic information offers a useful example of the tension inherent in the privacy/antidiscrimination essentialism described in Part I. Although advocates of safeguarding genetic information recognized the need for both kinds of protections, the initial efforts to regulate genetic information were often split between efforts to protect privacy and efforts to prevent discrimination. (159) For example, early state protections did not stop employers from obtaining that information, only from using it to discriminate. (160) While state laws focused on antidiscrimination measures, the first federal bill dealing with genetic information was the Human Genome Privacy Act, introduced in 1990. (161) The legislation, which ultimately died in committee, would have outlawed the unauthorized disclosure of genetic information generated by federal agencies or federally funded entities, offering individuals remedies as well as providing criminal penalties for intentional violations. (162) The next federal legislation designed to protect genetic information was the Genetic Privacy and Nondiscrimination Act of 1995. (163) That law sought to "protect against discrimination by an insurer or employer based upon an individual's genetic information" by limiting the conditions under which genetic information could be lawfully disclosed, and expanding the Civil Rights Act of 1964 to cover genetic-information discrimination. (164) Although the Human Genome Privacy Act and the Genetic Privacy and Nondiscrimination Act included privacy protections, the majority of bills proposed to combat genetic discrimination in the workplace simply outlawed the use of genetic information, not its acquisition. (165) Legal scholars recognized that genetic information simultaneously required both privacy and antidiscrimination protection. Yet like the legislators described above, many academics differentiated privacy and antidiscrimination as separate grounds for protecting genetic information with different concomitant legal safeguards. For instance, in a 1999 article, Lawrence Gostin and James Hodge differentiated between "information management" (privacy) and "harm avoidance" (antidiscrimination) as two distinct kinds of legal protections for genetic information. (166) In 2002, Anita Silvers and Michael Stein noted that both the actual pre-GINA protections for genetic information and the scholarly discussions of the underlying right at stake were split between privacy and equality interests. (167) Colin Diver and Jane Cohen put it simply in their 2001 piece, stating that privacy and antidiscrimination protections for genetic information are "analytically and morally distinct." (168) Given the assertion that privacy and antidiscrimination represented different goals with different types of legal safeguards, advocates of protecting genetic information would sometimes prefer one type of provision over the other. Most notably, pre-GINA, Pauline Kim argued that antidiscrimination was not the appropriate legal vehicle to protect genetic information. (169) Identifying personal autonomy--and not equality--as the relevant norm at stake, she advocated privacy as the best means for shielding employees from the misuse of their genetic profiles. (170) Describing antidiscrimination and privacy as "alternative paradigms" that "have distinct motivations and focus on different factors," Kim asserted that "the privacy rights model more appropriately addresses employer use of genetic information, both as a theoretical and a practical matter." (171) Thus, although Kim acknowledged the conceptual relationship between privacy and antidiscrimination, (172) she viewed their normative purposes and associated legal protections as separate and distinct, with privacy as the more desirable option. Conversely, Silvers and Stein argued in favor of antidiscrimination protection on the basis of genetic identity as an alternative to the privacy paradigm. (173) Post-GINA, scholars continued to differentiate between privacy and antidiscrimination as different types of legal protections. Bill Corbett has referred to GINA as "a hybrid--part antidiscrimination statute and part privacy law." (174) However, commentators differ on whether privacy or antidiscrimination constitutes the proper legal framework for safeguarding genetic information. (175)

   To be fair, while distinguishing between privacy and antidiscrimination as legal protections that are different in kind, these authors have also noted that GINA's protection of genetic privacy may thwart discrimination on the basis of genetic information by employers. However, instead of reading sections 202(a) and 202(b) as different types of protections that serve distinct underlying norms and legislative purposes, this Article asserts that GINA's privacy provision is explicitly designed to serve the statute's antidiscrimination objective. It is a real-world example of the privacy/antidiscrimination symbiosis. Although section 202(b) reads like a typical privacy protection, GINA's structure and legislative history indicate that Congress was acting with a clear antidiscrimination objective. (176)

   For instance, the statute's heading describes the law as an act "[t]o prohibit discrimination on the basis of genetic information with respect to health insurance and employment," not as an effort to protect genetic privacy. (177) Thus, GINA's primary legislative objective is antidiscrimination. (178) Not surprisingly then, the congressional findings focus more strongly upon the need for antidiscrimination--not privacy--protection. For example, after lauding recent developments in genetic science, Congress warned that "[t]hese advances give rise to the potential misuse of genetic information to discriminate in health insurance and employment." (179) The findings cite the history of forced sterilization and racially targeted sickle-cell screenings, in addition to present-day evidence of genetic-information discrimination, to demonstrate the need for a federal antidiscrimination law. (180) Finally, section 202(b)'s placement in the statute gives additional clues regarding its purpose. Congress included the ban on acquiring genetic information in the antidiscrimination--not the confidentiality--portion of the statute. (181) Interestingly, neither the text of Title II, nor the statute's purpose, explicitly mentions privacy. (182) In drafting section 202, Congress was not seeking to protect against separate and distinct privacy and antidiscrimination harms, but instead was intentionally using privacy to combat discrimination.

   Congress also referenced the chilling effect that the fear of discrimination had on the public's willingness to take genetic tests to justify its legislative intervention. (183) Interestingly, those fears implicate both antidiscrimination and privacy concerns. Pre-GINA, over 90 percent of Americans expressed anxiety about the misuse of their genetic information should potential discriminators gain access. (184) When asked about her fears related to genetic testing, one person reported:

   I just was worried about being viewed differently.... I don't know if discrimination is the right word--but it's probably the best word.... An analogy is: women who are young and probably going to have kids. Although they aren't discriminated against, everybody knows: if you hire this person, you might be stuck with a huge maternity leave bill. That influences people, even good people, indirectly. They have reservations, want a back-up plan, and may not give these employees all the work: "I won't give you all these projects." It would be illegal. But I'm sure a little bit of that goes on. (185) The individual was concerned that discrimination--including unintentional or unconscious discrimination--could quickly follow the knowledge of difference. In other words, when "everybody knows" about a vulnerable status, it opens the door for devaluation and unfavorable differential treatment. Another individual, who tested positive for a genetic variation associated with respiratory disease, likewise chose to keep the results private because she feared future disadvantage: "It just seemed safer to keep it to myself ... I didn't know what somebody would do with that information in the future ... and I was very concerned about it." (186)

   People who have taken genetic tests understand the relationship between testing, revelation, and discrimination. Specifically, they recognize how differences can lead to devaluation and eventually discrimination. People had two related fears surrounding genetic testing: (1) that their genetic information would be disclosed without their consent (intrinsic privacy harm) and (2) that once released, third parties would use that information to discriminate (extrinsic privacy/antidiscrimination harm). (187) Because individuals have to opt in for genetic-information discrimination in a way they do not for more traditional antidiscrimination categories, these twin concerns led some individuals to avoid genetic tests. (188) Those people employed their own version of protecting privacy to prevent discrimination. Restricting access to genetic information could also safeguard against future disadvantage on the basis of that information. (189)

   Among the fundamental reasons for protecting genetic privacy is bypassing genetic-information discrimination. (190) Aware of these and similar kinds of concerns, Congress concluded, "Federal legislation establishing a national and uniform basic standard is necessary to fully protect the public from discrimination and allay their concerns about the potential for discrimination, thereby allowing individuals to take advantage of genetic testing, technologies, research, and new therapies." (191) Congress passed GINA to protect against geneticinformation discrimination and to assuage anxieties regarding the potential for such...