The Genetic Information Nondiscrimination Act as an antidiscrimination law.

AuthorRoberts, Jessica L.

This Article provides the first in-depth reading of the Genetic Information Nondiscrimination Act (GINA) as an antidiscrimination statute. GINA, touted as the first major civil rights legislation of the new century, passed in May 2008. Thus, both to understand GINA's potential impact, as well as to improve its efficacy, the statute must be analyzed as an antidiscrimination law. When read as an antidiscrimination statute, GINA takes a clear position on one of the most contested issues in that area of law: antisubordination versus anticlassification. This debate queries whether antidiscrimination law should seek to elevate the social status of certain subordinated groups or should prevent all consideration of particular forbidden characteristics. GINA as currently drafted plainly favors anticlassification; it protects individuals from any intentional differential treatment by health insurers or employers based on genetic information. In contrast, an antisubordination approach to protecting genetic information would focus not on outlawing all forms of intentional, differential treatment, but on preventing a genetic underclass from forming. In particular, an antisubordination framework would allow employers to consider genetic information for accommodation purposes and victims of discrimination to challenge facially neutral policies that produce discriminatory results. This Article proposes that amending GINA to include more antisubordination protections would better safeguard genetic information.

INTRODUCTION I. UNDERSTANDING GENETIC INFORMATION A. Fear of Genetic-Information Discrimination 1. Social Genetic Determinism in the Past 2. Social Genetic Determinism in the Present and Future B. Norms Behind Protecting Genetic Information 1. Humanity 2. Democracy 3. Immutability 4. Privacy II. PROTECTING GENETIC INFORMATION A. GINA as an Antidiscrimination Statute B. What Makes GINA Different III. THEORIZING GENETIC INFORMATION A. Traditional Antidiscrimination Principles B. Antidiscrimination Principles and Genetic Information 1. Antisubordination and Genetic Information 2. Anticlassification and Genetic Information C. Benefits of Antisubordination Theory for Genetic Information 1. Title VII as a Paradigm 2. ADA as a Paradigm 3. Best Case Scenario CONCLUSION INTRODUCTION

Genetic-information discrimination captures the imagination. It conjures images of gloomy dystopias in which the content of our genes determines the outcome of our lives. In this troubling vision of the future, our education, careers, incomes, relationships, and myriad other social, economic, and personal goods depend solely on our genetic material. Yet while this world might appear largely hypothetical, the possibility of genetic-information discrimination exists outside Orwellian fantasy. The fear that potential discriminators might use heredity in making decisions about our lives also feels uncomfortably familiar, reminiscent of a time when the State could sterilize a person against her will in the name of the public good. Failing to protect genetic information at once portends a bleak future and recalls an unfortunate past.

Congress debated the issues surrounding the Genetic Information Nondiscrimination Act (GINA) (1) for close to thirteen years before passing the statute in a near-unanimous vote in May 2008. (2) Ultimately, it drafted GINA as civil rights legislation, intended to outlaw a burgeoning form of discrimination. (3) Specifically, GINA prohibits discrimination on the basis of genetic information in health insurance and employment. Title I prohibits health insurers from using genetic information for determining eligibility or premiums and from requiring genetic testing. (4) Title II proscribes employers from hiring, firing, classifying, or otherwise disadvantaging employees on the basis of genetic information. (5)

Congress's choice to draft GINA as civil rights legislation shapes both how we must analyze and apply GINA. This Article argues that antidiscrimination law provides the proper theoretical framework for understanding and critiquing GINA. Reading GINA using traditional antidiscrimination theory reveals the statute's weaknesses, as well as possibilities for remedying those shortcomings.

Since its passage, GINA has failed to attract much attention from antidiscrimination scholars. (6) This lack of scholarly attention is perhaps because GINA differs from all previous antidiscrimination statutes. First and foremost, genetic information is fundamentally unlike other antidiscrimination categories. It does not, at present, form the basis of a widely recognized social group, nor does it currently have an associated identity. (7) Moreover, genetic-information discrimination is not yet occurring on a large scale. (8) Thus, instead of reacting to existing discrimination in the past and present, GINA anticipates discrimination in the future, making it the first predominantly forward-looking antidiscrimination statute. (9)

Although genetic information differs substantially from traditional antidiscrimination categories like race, sex, or disability, antidiscrimination theory provides a useful lens for examining its protection. In the 1960s and 1970s, following Brown v. Board of Education, (10) antidiscrimination scholars began pondering what should be at the heart of the American antidiscrimination project: (1) elevating the social status of subordinated groups or (2) preventing any decisions--positive or negative--based on certain forbidden traits. These two diffeting iterations of the antidiscrimination principle became known as antisubordination and anticlassification, respectively.

In seeking to improve the social status of subjugated groups, the antisubordination principle advocates positive differential treatment and claims for both intentional and unintentional discrimination. For example, an antisubordination approach to racial discrimination would allow positive differential treatment, such as affirmative action and diversity initiatives while outlawing both outright discrimination and policies that unwittingly produce racial disparities. Because no socially recognized group of genetically disadvantaged people exists at present, an antisubordination approach to protecting genetic information would seek to prevent the formation of a genetic underclass. Conversely, the anticlassification principle supports prohibiting all intentional differentiation on the basis of a protected trait. In the context of race, an anticlassification approach would forbid any explicit consideration of race--positive or negative--including affirmative action and diversity initiatives and would allow facially neutral policies that inadvertently produce racially disparate results. Likewise, anticlassification protection for genetic information would prohibit entities from ever considering genetic information for any reason.

As written, GINA favors anticlassification: it bans all consideration of genetic information and does not allow disparate impact actions. This Article argues that GINA could benefit from incorporating more antisubordination protections. In particular, the antisubordination principle supports amending GINA to allow positive differential treatment for accommodation purposes and challenges to facially neutral policies with discriminatory results. Moreover, by targeting the formation of a genetic underclass, antisubordination would lead to more consistent, comprehensive protection for genetic information.

This Article proceeds in three Parts. Part I explores the reasons behind protecting genetic information. Part II analyzes how Congress used antidiscrimination law to protect genetic information and examines the statute's current protections. Part III reads GINA using the traditional antidiscrimination principles of anticlassification and antisubordination, concluding that GINA could benefit from incorporating more antisubordination protections.


    Before parsing GINA, it is useful to take a step back and examine why genetic information warrants protection. Genetic-information discrimination--at least as conceived by GINA (11)--is not yet occurring on a widespread basis. (12) Only three federal cases dealt with genetic-information discrimination prior to GINA. (13) Furthermore, despite the numerous state statutes in force for decades, (14) no genetic-information employment discrimination cases had been filed when GINA passed in 2008. (15) Critics of GINA argued that discriminating on the basis of genetic information was a practical impossibility: we simply do not know enough about genetic science to use it to discriminate. (16) This limited history of discrimination raises an interesting question: if entities were not using genetic information to discriminate (at least not to a significant degree), why would Congress pass a federal statute protecting genetic information? This Part provides some of the practical and normative justifications behind safeguarding genetic information absent large-scale, current discrimination.

    1. Fear of Genetic-Information Discrimination

      Although Congress likely had multiple motivations for enacting GINA, (17) alleviating fear was one of the statute's major objectives. (18) Despite the limited examples of genetic-information discrimination, more than ninety percent of Americans expressed concern regarding the misuse of their genetic information. (19) They feared that, if given access, potential discriminators would use genetic information to make decisions. For example, a health insurer could use an insured's genetic information in the underwriting or rating process. Thus, if a person is at an increased genetic risk for developing cancer, a health insurer might increase her premium or even deny coverage based on that risk. Similarly, an employer could use an employee's genetic information in making an employment-related decision. For instance, an employer may choose...

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