What Makes Genetic Discrimination Exceptional?

Abstract

I. INTRODUCTION Recent advances in understanding the genetic basis of disease has inspired hope but also fear. While establishing a link between a person's genetic makeup and a propensity to disease may lead to better treatment, many scientists, physicians and genetic counselors also worry that it may lead to discrimination. Although access to health insurance is the primary concern, people also fear discrimination in life and disability insurance, employment and other contexts, such as child custody decisions or adoption. In response to this concern, many state legislatures have passed laws forbidding genetic discrimination.1 While most of these laws focus on health insurance,2 some also prohibit genetic discrimination in employment3 or in life or disability insurance coverage.4 These laws have been the subject of both praise and criticism. Defenders of the laws see them as important and necessary, though arguably incomplete.5 Critics view them as unjustified and unwarranted.6 However, the question that dominates current literature is whether genetic discrimination is meaningfully different from discrimination on the basis of general health status; or as the debate is often framed, whether anti-discrimination laws ought to be genetic or generic.7 In fact, this is one point on which there is some convergence between the critics and supporters of anti-discrimination laws. Critics of the current laws that target genetic discrimination argue that genetic discrimination is no different from discrimination on the basis of health status and, additionally, that such discrimination is necessarily at the heart of the proper administration of insurance.8 Therefore, these critics argue, the current laws are both unwise and unjust. Some supporters of anti-discrimination protection acknowledge that there is no good reason to differentiate between those with a genetic predisposition to disease and those who already suffer from disease. However, rather than concluding that no anti-discrimination laws are necessary, these commentators see the current laws as merely a first step in the right direction. The second step, then, would be a generic law that protects people from discrimination on the basis of health status. This Article also addresses the question of whether special genetics legislation is warranted. In other words, why treat discrimination on the basis of genetic variation differently from discrimination on the basis of health? Although scholars offer a myriad of arguments in support of laws prohibiting genetic discrimination, most of these arguments fail to justify the need for genetic (as opposed to generic) legislation. There are, however, two reasons for specifically targeting genetic discrimination that warrant further exploration. The first of these-that legislation prohibiting genetic discrimination is needed in order to safeguard the health benefits that the new genetic science offers-is powerful and important. But, it is more complex than has been thus far recognized. This Article will examine that argument in depth, and argue that the strength of the argument depends on the answers to several empirical questions that require further study. The second argument that warrants a closer look-which implicitly underlies many of the arguments in the literature on genetic discrimination-has neither been teased out nor examined explicitly. Genetic discrimination may be meaningfully different (and worse) than health status discrimination because of what it expresses. This claim rests on the more general claim that the expressive dimension of action matters morally and legally.9 In arguing for protection from genetic discrimination, commentators commonly refer to the history of eugenics both in this country and in Europe, particularly Nazi Germany. However, this reference is made in a cursory fashion without any articulation of why that history matters or what part it plays in building an argument for legislation prohibiting genetic discrimination. …