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Human Rights and Genetic Discrimination: Protecting Genomics' Promise for Public Health Anita Silvers

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Human Rights and Genetic Discrimination: Protecting Genomics' Promise for Public Health Anita Silvers College of William & Mary Law School William & Mary Law School Scholarship Repository Faculty Publications Faculty and Deans 2003 Human Rights and Genetic Discrimination: Protecting Genomics' Promise for Public Health Anita Silvers Michael Ashley Stein Repository Citation Silvers, Anita and Stein, Michael Ashley, "Human Rights and Genetic Discrimination: Protecting Genomics' Promise for Public Health" (2003). Faculty Publications. 712. https://scholarship.law.wm.edu/facpubs/712 Copyright c 2003 by the authors. This article is brought to you by the William & Mary Law School Scholarship Repository. https://scholarship.law.wm.edu/facpubs Human Rights and Genetic Discrimination: Protecting Genomics' Promise For Public Health Anita Silvers and Michael Ashley Stein he potential power of predictive genetic testing prophylactic and therapeutic intervention. They also delay as a risk regulator is impressive. By identifying any gain of knowledge (for themselves or others) about T asymptomatic individuals who are at risk of be- their genotype by refusing to participate in research proto­ coming ill, predictive genetic testing may enable those cols. Thus, fear of discrimination (whether or not factually individuals to take prophylactic measures. As new thera­ justified) has the potential to block benefits that otherwise pies become available, the usefulness of genetic testing might be gained from genomic knowledge. As a conse­ undoubtedly will increase. Further, when a person's family quence, scientists like Dr. Francis Collins, head of the medical history indicates a propensity towards a particular National Human Genome Institute, recommend strong le­ genetic disease, a negative test result may open up other­ gal protections against genetic discrimination.4 wise denied opportunities by showing that this person has Nevertheless, effective fed~ral regulation specifically not inherited suspect genes. In the latter type of case, a protecting individuals from genetic discrimination is almost negative test result may reassure the individual that pursu­ nonexistent. Advocates for protection have sought mea­ ing a particular course of action (such as planning a family sures that either protect against certain violations of or training for a job) is worthwhile, or may convince pro­ individuals' privacy or that prohibit specified discrimina­ spective employers that the individual will be a serviceable tory actions. As we show, however, each of these solutions employee. contains a fatal flaw. Privacy-based protections seek to se­ Concomitant with these benefits are prospective harms quester genetic information, but they do not adequately that can arise from the use of information derived from address the practical realities of how genetic information is predictive genetic testing to discriminate against employ­ disseminated. Antidiscrimination mandates attempt to pro­ ees.1 For example, to mitigate responsibility for an hibit certain actions based on genetic information, but do employee's injury or disease, an employer might argue not address the practical realities of how discriminatory that the individual was. genetically disposed to such an action is precipitated. Ultimately, both approaches leave outcome by, for instance, a gene for carpal tunnel syn­ many people who are genetically disposed to disease and drome, or the employer may fire an individual if testing disability, or have family histories of such dispositions, reveals a genetic susceptibility to workplace toxins or to a vulnerable to social threats that may prevent the realiza­ genetic condition that results in disability. 2 In general, as­ tion of the benefits genomics promises.5 ymptomatic people who believe they will be denied We argue in this article for a much broader approach, opportunities, compensation, and benefits if classified as an equality-based protection similar to the bans against genetically flawed will adopt defensive strategies against race and sex discrimination. In doing so, we identify some being so categorized. The most obvious defense is not to problems that have made current prohibitions against dis­ be tested.3 Regrettably, in protecting themselves by evad­ ability discrimination less effective than was originally ing testing, individuals relinquish the advantage of hoped, and we show that the prevailing approach to pro­ tection against genetic discrimination is subject to similar journal ofLaw, Medicine & Ethics, 31 (2003): 377-389. weaknesses. In particular, we show that neither existing © 2003 by the American Society of Law, Medicine & Ethics. federal law banning disability discrimination nor proposed 377 Volume 31:3, Fal/2003 federal genetic discrimination law protects asymptomatic consent to disclosure may be explicitly required or instead individuals with genetic anomalies who pursue prophy­ presumed. By awarding damages for past violation of indi­ lactic or mitigating measures. The diseases associated with viduals' privacy rights, tort law helps protect their monetary these anomalies may never be expressed or, if expressed, interests but may be inadequate to preserve other inter­ may not manifest as unmitigatable functional impairments. ests, especially those related to individuals' dignity and Yet genetic anomalies may be used as proxies to disqualify autonomy.n their possessors from opportunity, as biological properties Privacy rights also are protected by evidentiary privi­ associated with race and female sex have been used in the leges, contract and property law, and federal and state past. We therefore advocate a novel civil rights paradigm statutes. Medical patients' privacy is covered by a patch­ that safeguards individuals from discrimination on the ba­ work of federal and state provisions, including the sis of genetic identity, as they now are protected from accreditation standards for hospitals. 12 The Privacy Act of discrimination based on their identities with respect to race 1974 limits federal agencies' use of information to those and sex. which are "relevant and necessary" for their authorized mandates, permits individuals to access their own records and to request emendations, and proscribes the disclosure CRmQUFS OF ExisTING APPROACHFS To of information to third parties. 13 On the state level, the PROTECI1NG AGAINST GENETic DISCRIMINATION 1996 New Jersey Genetic Privacy Act makes genetic infor­ In the main, two lines of thought about the grounds for pro­ mation the patient's private property (regardless of who tection against genetic discrimination have been pursued. has paid for the genetic tests) and requires informed con­ Initially, the appeal was to citizens' rights to privacy. More sent to any disclosure of test results. 14 recently, antidiscrimination safeguards have been invoked. Despite these foundations, privacy-based solutions to genetic discrimination that seek to sequester genetic infor­ mation do not effectively address the practical realities of Privacy how genetic information may be misused. First, in many The privacy model has been variously advocated and businesses, individuals who administer health-care ben­ interpreted by many commentators. As demonstrated by efits or manage health and safety programs also have Anita Allen and Mark Rothstein in discussions of genetic responsibility for some aspects of managing personnel. In privacy, the desire for "privacy" can be inspired by and these circumstances, the expectation that employers can encompass divergent values and goals, including moral, maintain a firewall so that information found in health­ proprietary, and decisional ones.6 Pauline Kim and care records never influences personnel decisions may be George Annas, for example, ground their respective ar­ unrealistic. Second, when a proprietor waives a privacy guments for privacy protection in the value of protecting right for one purpose, the information may in practice be an individual's autonomy to control her own destiny. 7 used for another purpose, especially if, in the future, a These commentators advocate privacy-based protection, genetic anomaly currently correlated with one condition is seeking, as a general matter, to sequester access to indi­ found to correlate with another. For example, individuals viduals' genetic information.8 who provide DNA to be tested for susceptibility to heart At least two areas of U.S. law speak to privacy rights. disease could, years later, find that they have been dis­ Constitutional law, in application of the Fouri:h, Fifth, and missed from their employment as airline pilots because of Fourteenth Amendments, emphasizes preserving individu­ new data that the gene has some expression for an early als' control over intimate information affecting their personal onset of Alzheimer's disease. Third, where more than one identities, particularly as it relates to the development of person has a property right in certain information, it is not the emotional, cognitive, and spiritual dimensions essen­ clear whose interests have priority in respect to maintain­ tial to autonomous beingsY Tort law also offers individuals ing control. For example, when test results for one family some privacy protection by penalizing encroachment upon member yield information about another family member, or revelation (or misrepresentation) of personal facts. As it is unclear whether courts will defer to the individual June Madiski has noted, the common law has long recog­ who wishes to prese1ve privacy or to the one who will nized the right to be "let alone" from intrusion by others, 10 benefit from
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