- BIOETHICS FORUM ESSAY
The President’s Proposal for Genetic Discrimination Misses the Point
Last month President Bush called once again for Congress to enact the Genetic Information Nondiscrimination Act, a bill that has previously passed the Senate only to be killed by Republicans in the House. Given the President’s record on civil rights issues, not to mention his views on biomedical research, his support for a bill that seeks to outlaw discrimination by employers and insurers may seem surprising, indeed so surprising that it should raise some red flags among the bill’s supporters.
The reasons for GINA are self-evident. Since the launching of the Human Genome Initiative back in the 1980s, scientists and advocates have worried about discrimination on the basis of genetic discrimination. Advocates for individuals at risk of genetic diseases and communities with high rates of genetic diseases have feared that those who undergo genetic testing may be discriminated against in the workplace, or when they seek health or life insurance, once their genetic profiles were known. Even the simple fact that individuals seek genetic testing might trigger discrimination. On the other hand, physicians and geneticists have worried that the public will avoid genetic tests until the cloud of discrimination was removed. Discrimination, therefore, has been viewed as standing in the way of the genetic revolution.
To date, there has been little evidence that genetic discrimination is in fact widespread. Although troubling cases have been reported, they have been relatively rare. Of course, that does not mean that genetic discrimination is not more prevalent than has been documented. It may simply mean that such discrimination is hidden. Given the current uncertain legal status of genetic discrimination (although genetic discrimination is not clearly prohibited by federal law, many states have laws barring the practice, and existing federal statutes arguably limit some forms of genetic discrimination), employers and insurers are not likely to boast about discriminating on the basis of genetic information.
Even if genetic discrimination is not widespread, though, fear of it is. Studies have shown that large majorities of the population are hesitant to undergo genetic testing precisely because they worry that it may lead to discrimination. These fears are not irrational. Underlying them is a realistic appreciation that both employers and insurers have strong incentives to discriminate against individuals who are at higher risk for genetically based illnesses. Indeed, what is remarkable about genetic discrimination is that – in contrast to discrimination on the basis of race, gender, or even in most cases disability – it is economically rational. Given the way we finance health care in this country, employers have an all-too-powerful reason to avoid hiring or retaining workers who are apt to have large medical bills or have dependents with large bills. And for insurers, genetic discrimination is simply another tool for reducing risks and thereby costs. In short, the public understands that genetic information may give both insurers and employers a new way to continue the already prevalent and economically rational practice of cherry-picking.
Unfortunately, there is reason to doubt that GINA will prevent much discrimination from occurring. For one thing, the bill does not outlaw so-called “disparate impact discrimination” – that is, unintentional discrimination. This may well create a loophole permitting employers and insurers to develop policies that have the de facto effect of discriminating on the basis of genetic status without running afoul of the law. Moreover, in thinking about GINA’s possible impact, it is critical to recall the significant difficulties that plaintiffs have had in recent years in prevailing in any discrimination cases, even under statutes that permit plaintiffs to proceed on disparate impact theories. Indeed, GINA is needed only because the courts have narrowly construed the Americans with Disabilities Act, vitiating the once-real possibility that the ADA would serve to prohibit most forms of genetic discrimination. Given the composition of the federal courts, there is little reason to believe that plaintiffs will have much greater success enforcing GINA than they have had in enforcing prior civil rights laws.
The most compelling reason to doubt GINA’s efficacy, however, is the simple fact that legal prohibitions alone are notoriously ineffective in preventing behaviors that other laws and social institutions are designed to promote. As any parent knows, if you want your child not to eat cupcakes, you don’t simply tell the child not to snack, you put the cupcakes out of plain sight. Likewise, if you want teens not to smoke, you don’t simply tell them not to do it; you alter the legal and social landscape so that smoking is less typical, more expensive, and far less glamorous. In the case of discrimination on the basis of genetic information, this means that law must alter the incentives of health care financing so that it becomes less rational to discriminate on the basis of genetic information.
This broader approach, however, does not appear to be in the President’s agenda. For six years, the administration has all but ignored the increasing numbers of Americans without health insurance as well as the increasing strains on our health insurance system. And when the administration has offered proposals about these pressing problems, it has favored approaches, such as health savings accounts, that have emphasized market competition, thereby the increasing the stratification of the population on the basis of risk. Such approaches, of course, make it even more costly to hire or be enrolled in plans with so-called high risk individuals or families, including those whose genetic information warns that they are at an increased risk of facing a costly medical problem.
This week, in his State of the Union address, the President proposed a new initiative: replacing the tax exclusion of employer-provided insurance premiums with a standard individual deduction that would be limited so as not to provide tax benefits for costly plans. This controversial proposal has far-reaching implications and warrants full discussion on its own merits. It is worth noting, however, that the President’s plan would create a strong tax incentive for employers or individuals to avoid purchasing health insurance plans that insure high cost individuals – including, of course, those who are at risk of genetic illnesses. In other words, under the President’s plan, the tax system would promote the behaviors that GINA would outlaw.
As long as such powerful incentives to discriminate pervade our health care financing system, it is doubtful that GINA, or any law that simply proscribes discrimination, can truly end discrimination or the fear of it. That does not mean, however, that the bill should not be enacted. Given the ambiguous status of genetic discrimination today, clarity is certainly welcome. Moreover, civil rights statutes, especially federal civil rights statutes, can play a powerful norm-setting role. In this case, GINA can serve to remind the nation of the injustice of denying individuals and families the ability to work or obtain health insurance simply as because of their genetic make-up. This is a reminder that will become even more necessary if we enact new policies that increase the incentive to discriminate.
Still, GINA’s ability to articulate a norm should not be confused with its capacity to alter behavior. Years ago, the legal scholar Gerald Rosenberg, after studying the impact of civil rights laws, warned that courts and rights-based remedies can become the “flypaper” for social reform. Rosenberg meant that reformers were too easily lured by the belief that civil rights litigation could cure social problems. Likewise, GINA’s supporters should avoid the temptation of believing that legislation against discrimination will prevent discrimination. To the contrary, if GINA distracts our attention from the broader injustices of our health care financing system, it will not solve the problem it seeks to remedy, it will have only made it worse.
– Wendy E. Parmet