By Kaitlyn Dowling, based on research by the Cyberlaw Clinic at the Berkman Klein Center for Internet & Society
In a year-long series on Bill of Health, we’ll be exploring the legal scholarship on genetic non- discrimination. We’ll talk more about GINA and state laws protecting citizens from genetic discrimination. We hope these posts help shed light on this complex and ever-more-relevant area for legal scholars, policymakers, and the public at large. Read the previous posts in the series.
We’ve covered the history of genetic non-discrimination legislation and the potential risks of being discriminated against in housing and lending and education based on genetic data. Those risks are clear: there are many reasons why a bank, landlord, or school might want to take a person’s genetic information (and, thus, their potential future health) into account. Let’s take a deeper dive into two broad arguments in favor of strong privacy protections for genetic information and their consequences.
A common policy argument in favor of genetic non-discrimination legislation is that genetic discrimination is unjust because the outcomes implicated by one’s genes may never manifest. In 2001, President George W. Bush stated that “[g]enetic discrimination is unfair to workers and their families. It is unjustified – among other reasons, because it involves little more than medical speculation. A genetic predisposition toward cancer or heart disease does not mean the condition will develop.”
Even predictive screenings retain a level of uncertainty, as they do not account for other variables such as lifestyle, diet, exercise, and environmental and social factors that may compensate for or exacerbate certain genetic predispositions. Writing for Tulane Law Review, Michael Malinowski, and Robin Blatt warn of how genetic tests can “become the equivalent of biological tarot cards, subject, like the Tarot, to misinterpretation and overreliance.”
One counter argument is that as genetic testing techniques continue to improve, uncertainty will decrease. Moreover, much of the literature around genetic testing contends that uncertainty is enhanced by human error and the misinterpretation of the test results beyond the uncertainty regarding the probability of developing an illness. Essentially, the risk of misinterpretation is likely to remain a significant problem even as the predictive accuracy of genetic testing technologies increases.
An additional issue with this line of argument is that policy arguments based on uncertainty implicitly sanction discrimination against people with manifested diseases, disorders, and disabilities. When President Bush says genetic discrimination is unfair because the condition may never manifest, he tacitly signals that, by contrast, discriminating against someone afflicted with a disease is not unfair. Not only is this ethically problematic, but lawmakers who embrace this justification run the risk of codifying this implicit acceptance of discrimination on the grounds of disease or disability in the law.
Finally, the uncertainty argument seems contrary to the rationale that genetic non-discrimination legislation should have the same scope as disability non-discrimination law. Advocates of genetic non-discrimination may be placed in the position of arguing on the one hand that the law is needed because asymptomatic people deserve protections similar to the ones provided for in the ADA, while on the other hand arguing that genetic discrimination is unjust because these individuals should not be treated as if they are symptomatic.
Immutability and Individual Stigmatization
Immutability concerns relate to the belief that discrimination on the basis of immutable genetic characteristics is inherently unjust. Individuals cannot control or change the genes they inherit. Therefore they “should not be penalized” for these idiosyncratic personal characteristics as this would only serve to further compound “misfortunes outside [of their] control.” Moreover, without more robust legal protections against discrimination in place, immutable genetic and biological classifications risk exacerbating the impact of “labeling and stigmatizing” individuals.
However, the immutability argument is not necessarily that clear-cut. While some genetic conditions are immutable, other genetic conditions only develop if an individual is exposed to certain environmental factors. Essentially, genetic conditions are not all strictly immutable. As such, characterizing all genetic conditions as immutable could be over- or under-inclusive of the kind of genetic information that should be protected.
On one hand, protecting genetic information that relates to more “mutable” conditions arguably results in a slippery slope that could become over-inclusive of conditions that implicate lifestyle and behavioral factors as well as genetic factors. For instance, lifestyle factors play a greater role in individual susceptibility to obesity and substance addiction than in conditions like Huntington’s disease and cystic fibrosis, even though all of these conditions have some genetic basis.
On the other hand, a strict definition of immutability could be under-inclusive; American history is littered with instances when choice was falsely attributed to the misfortune of certain people and groups. By incorrectly attributing some outcomes to personal choice, immutability arguments implicitly legitimize the unequal treatment of people who are wrongly believed to be primarily responsible for their outcomes. For example, individuals who have made a “choice” to forego prophylactic treatment may be discriminated against despite the many factors that may have made that choice less the product of free will that it appears to be.
It is possible that advances in genetic testing could mitigate this under-inclusion by contributing to a better understanding of how one’s genes influence certain outcomes. For example, obesity is commonly regarded as a consequence of an individual’s choices to remain inactive, or to eat a poor diet. But if polygenic testing reveals genetic predispositions toward obesity, it may destigmatize this and other outcomes that are generally attributed to personal choice.
Although immutability can be a powerful legal argument with respect to anti-discrimination jurisprudence, advocates should take care in how they determine the scope of genetic conditions that should come within genetic discrimination protections. Specifically, advocates should be aware of the danger of creating a hierarchy wherein some conditions are considered genetic, and therefore protected for the purpose of anti-discrimination laws, while others are considered to be choices and therefore not protected.