• 13 January 2010

Fairness, Disability, and Genetic Antidiscrimination

Jeffrey S. Morrow - 2010 J.D. Candidate, Georgetown Law School

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Genetic discrimination is unfair. This observation is, by all accounts, largely uncontroversial. As a result of the Genetic Information Nondiscrimination Act of 2008 (GINA), which took effect in late November, genetic discrimination is also now illegal.1 GINA prohibits employers from using genetic information in employment decisions and prohibits health insurers from using genetic information in determining eligibility or rates.

On first learning of the bill during the 110th Congress, I assumed the Democrats advancing the bill would need their new majority to overcome at least some amount of Republican skepticism. What actually transpired was a floor debate in which the statements of staunch conservative Senator Brownback (R-KS) sounded functionally identical to those of the late liberal lion Senator Kennedy (D-MA). The final bill received only one negative vote in the entire Congress. Despite a research literature firmly divided over genetic discrimination’s very existence and whether a law like GINA would have economic repercussions, the entire political spectrum acted with unanimity to create genetic antidiscrimination laws. Why? Because genetic discrimination is unfair.

Social fairness tends to trump other concerns. Even if racial discrimination were economically rational, for example, it likely would remain prohibited as offensive to our fundamental sense of justice. The legal enforcement of social fairness is the very essence of antidiscrimination legislation and it explains why GINA received near unanimous approval, despite the uncertainty about genetic discrimination.

The difficulty comes in explaining why genetic discrimination is unfair, even if we believe it be so. This essay—like the Note from which it is adapted—probes the boundaries of genetics as a category and of the social fairness invoked in support of that category. The result is not a conclusion or recommendation, nor a critique of GINA. Instead, it explores how genetics and the seemingly clear principles of social fairness can break down, revealing an altogether more complex, normative, and ad hoc approach than at first glance.

 
I.
What is Genetic Discrimination?

Exploring the human genome has uncovered numerous genetic variations that may indicate and, perhaps someday, control disease. In 1990, researchers identified particular chromosomal variations associated with breast cancer. Carriers of these “BRCA” mutations bear a substantial risk of developing breast cancer—anywhere from thirty to eighty percent. This discovery presented obvious benefits: better targeting meant better preventive treatment and earlier detection. Soon after, researchers found links to Huntington’s disease and cystic fibrosis. Over the next two decades, there would follow hundreds of other theoretical connections between specific health outcomes and identifiable genetic variations, with countless more to come.

But this information could have negative consequences, especially in terms of medical insurance. For individuals seeking insurance, such genetic predispositions might be the ultimate in preexisting conditions, bringing fears of lost or denied coverage. Stories of these difficulties soon followed. A 1995 article in Science describes a healthy four-year-old child denied coverage twice because doctors discovered—after his mother and maternal uncle died of sudden cardiac arrest—a genetic pattern that increased susceptibility to heart conditions. Interviews appeared with people who sought tests for genetic predispositions to cancer, but worked to hide the test from their insurers, lest they lose coverage.

The workplace brings a similar worry. An employer providing group insurance could view a job candidate with a genetic predisposition to disease as a financial liability who could drive up that employer’s costs, insurance or otherwise. If that financial risk exists, then a potential employee with a genetic predisposition to disease is no doubt disfavored relative to one without that predisposition.

These are the archetypal examples of genetic discrimination, now barred by GINA.

 
II.
Genetic Antidiscrimination as a Matter of Fairness

Discussions of genetic antidiscrimination inevitably turn to the “disability” model of fairness, whereby people should not be made to suffer for immutable conditions for which they themselves are blameless. Not coincidentally, much of GINA’s operative language mirrors the language of the Civil Rights Act of 1964 and of the Americans with Disabilities Act, the most prominent antidiscrimination laws focused on immutable and involuntary characteristics. Senator Levin (D-MI) crisply summarized the disability model as applied to GINA: “We do not determine our own DNA. We are born with it. We cannot allow discrimination on the basis of such a fundamental aspect of life and one in which we had no choice.”2

Surveys show that this idea resonates, prompting public support for accommodations and general feelings of empathy. Consider a spectrum of impairments: At one end of the spectrum is a condition like blindness, where support for accommodation and protection is nearly universal. People generally believe that the blind have neither caused their condition nor are able to change it. At the other end would be conditions like drug addiction and obesity, broadly considered not to merit legal protection or specific accommodation.  In the popular conception, drug addiction is neither immutable nor is the sufferer blameless because the addiction appears to be within his control. In the case of obesity, studies show that the perception of blame prompts distinctly negative social biases. Genetics would be, in this model, similar to blindness.

Reinforcing the disability model’s natural relationship to genetics is their inclusion in the Equal Employment Opportunity Commission’s interpretation of the ADA. An Executive Order by President Clinton expressed the intention of his Administration to include genetic conditions within the scope of the ADA and the EEOC’s protection. Thus, the fairness guarantees of the ADA—and presumably the fairness principles that justify disability law—applied to genetics. In the disability model, society is willing to bear some amount of cost-sharing and market distortion in order to protect an afflicted class it views as blameless and helpless, and it now wishes to extend that categorization to genetics.

 
III.
The Problem of Categorizing “Genetics”

When we say we wish to protect genetics because they represent a fixed source of involuntary disadvantage, do we mean it?

Surely, we want to protect the four-year-old who cannot get insurance because of a genetic predisposition to heart disease. We want to protect the woman whose increased risk of breast cancer makes her an increased financial liability to her employer. The category of genetics, however, and the disability model by which we support it may be inexact ways of capturing that sentiment.

The first difficulty with categorizing genetics is that it may not be a discrete category at all. Genetic information is fundamentally medical information, albeit medical information obtained through a particular method. The thinness of this distinction relative to the bold lines created by antidiscrimination legislation have led some to criticize the phenomenon of “genetic exceptionalism”—the idea that genetics and the information it provides are somehow different in kind from comparable non-genetic medical information. Critics of a genetics-oriented approach to legal protection charge that the distinction is fundamentally arbitrary and elevates the method of acquiring information (genetics) above the content of that information (diseases and predispositions).

The possibly illusory nature of the boundary between genetic and non-genetic is highlighted by the difference between what is and is not considered permissible under various pre-GINA state genetic antidiscrimination laws. Some state laws bar consideration of genetic test results but allow consideration of family history that, without any specific “genetic testing,” would suggest genetic predispositions. Thus, intuiting the presence of a BRCA variation by family history would be permissible, whereas a genetic test for the very same information would be impermissible. Before GINA, Texas’s genetic antidiscrimination law specifically delineated that the former would not count as genetic testing, and thus would be permissible. Other states banned this practice as a subset of genetic discrimination.

Investigating a greater likelihood of heart disease through a combination of heart rhythm, cholesterol, and blood pressure measurement is permissible and reasonably common, possibly even in an individual insurance context. Determining a greater likelihood of heart disease by detecting a chromosomal variation is impermissible, though such a chromosomal link has been identified, and may prompt the permissibly identified secondary symptoms.

As new genetic links are found, more potential conditions will become “genetic” and the use of genetic markers to detect them will, in theory, become legally problematic. Perhaps more curious, however, is that few expect this to happen, imagining a clarity between protected genetics and unprotected genetics. But, of course, once that distinction is made, the notion of a category—rather than a normatively selective grouping—grows quite murky.

 
IV.
Genetics Test the Limits of Immutability

The disability model itself in the context of genetics may be less applicable than it first seems. Reflexively, we sympathize with the bearer of a disadvantageous genetic predisposition. The person with the predisposition to cystic fibrosis, especially the person who has manifested cystic fibrosis, has drawn a card that many feel, under other circumstances, they themselves could have drawn. These are the clean examples of genetics as disability with obvious and pleasing divisions. But a broader look at genetic predisposition calls into question how applicable the characteristics of immutability and blamelessness are to the category of genetics as a whole, or which genetic predispositions people would be comfortable protecting.

The fixed and unchanging nature of genetic variations may be more flexible than is generally assumed. The first sense in which this is true is the potential someday to literally alter one’s genetic makeup through the burgeoning practice of gene therapy. Early research suggests techniques that could modify, correct, or blend specific genes. The practical medical application of such technology, already in trials, could well emerge in the near future. Such direct control over genetics would cast new light on the questions that currently characterize the genetic discrimination debate. If genetic therapy could correct for genetic variations, would it be appropriate for an insurer who covers such therapy to charge more to patients who choose not to get it? Would it be appropriate for employers to recommend such treatment? Surely we would not ask someone to alter her race. Are her genetics the same?

More complex questions along the same lines also arise regarding the ability to affect one’s predisposition to a disease even if unable to affect the genes underlying that predisposition. Environmental changes, medicine, and surgery all can reduce the likelihood that a person predisposed to a disease will ever actually suffer it. For example, a woman with the BRCA gene variations predisposing her to breast and ovarian cancer can functionally eliminate her increased risk through hysterectomy or preventive mastectomy. Although it hardly satisfies a sense of social justice to condition affordable medical care on a willingness to undergo such an invasive and personally difficult procedure, some might think it wholly appropriate for insurers to be able to judge on that basis if a pill-based treatment could achieve the same effect.

The introduction of such possibilities creates a sliding scale along which to view the evaluation of genetic information: If a procedure were effective and non-invasive, would it be worth creating a market distortion and collectively bearing added risk in order to protect someone’s ability to refuse that procedure? What if the procedure were only moderately invasive? GINA does not incorporate the ability of a person to mitigate his or her risks in prohibiting the actuarial consideration of genetic information. Still, once the condition appears to be within a person’s control, the fair outcome, even under a disability model, becomes less certain.

 
V.
Immutability’s Just Another Word for “Things We Don’t Mind”

Even accepting genetic conditions to be immutable, the discovery of genetic bases for conditions generally considered behavioral calls into question what blamelessness means in the context of an immutable predisposition. In the popular press, genetic research has produced such tantalizing headlines as “Can’t Quit Smoking? Blame Your Genes,” suggesting that the voluntary behaviors underlying addictions may actually invoke involuntary, immutable genetics.3 This calls into question what it means for a person suffering the effects of one genetic condition (for example, breast cancer) to be blameless while a person suffering another (for example, drug addiction) shoulders responsibility. We can never quantify whether it is harder for a person with a predisposition to drug use to abstain throughout his or her life than for a person with a predisposition to cancer to undergo preventive surgery. Genetic predispositions to ostensibly behavioral conditions reveal our inability to truly separate the involuntary from the voluntary and the immutable from the malleable.

Homosexuality presents another interesting dilemma as a characteristic that may have a strongly genetic component. Unlike genetics, sexual orientation has no federal antidiscrimination protection, and yet we would not necessarily expect the possible genetic origins of homosexuality to place that characteristic under GINA’s protection. We would also not expect such protections to have the kind of unanimity that characterized GINA’s passage. Studies have shown that the belief that homosexuality is an inborn genetic trait is highly correlated to a willingness to provide additional rights and protections based on sexual orientation.

This tracks with the immutability model of fairness, a belief that the immutable merits protection; but the correlation may well occur in the other direction, so that favoring protection predisposes one to believe that the characteristic is immutable. Indeed, groups morally opposed to the expansion of gay rights reject claims of a genetic basis for sexual orientation; this suggests that in addition to favoring protections for that which we recognize as immutable, we may choose to see as immutable that which we feel is deserving of protection, and to see as chosen that which we do not.

 
Conclusion

In late October, an Italian court reduced the sentence for a convicted murderer on a finding that he had a genetic predisposition to violent behavior. In theory, the moral logic underpinning this decision perfectly echoes the sentiments codified domestically through GINA. Yet the legal and scientific presses, here and abroad, greeted this story with skepticism and troubled curiosity. Could this be what we—and our unanimous Congress—mean by holding people harmless for their genetic predispositions?

Nice as that categorical approach sounds, it does not seem to be what we actually want. Seven months after GINA’s passage, the New York Times reported on a limited trend of parents who tested their infant and toddler children for genetic modifications indicating the potential to excel at particular sports. These parents did not try to shield children from genetic fate, or to see that their lives remain unaffected by immutable genetic constraints. Quite the contrary. We can envision the story’s eager parents promoting their children’s genetic predispositions to potential trainers, even to the detriment of children born comparably “deficient.” We are, in short, only beginning to learn what our genetics (and those of our children) mean. We are conflicted over what to do with the information, and how it may change our understanding of our fates, our free will, and our obligations to one another.

Is all genetic discrimination unfair? If so, is it unfair for reasons we can clearly articulate, or is it simply a matter of faith? A fuller examination of genetics and their implications suggests that the common notions of fairness do not support the entire category of genetics very well. Indeed, the logic behind these constructs devolves into the circular and ad hoc.

Genetics may eventually become a category that encompasses so much as to render itself meaningless. It may prove medically malleable. And to the extent that genetics are immutable, that immutability may suggest a different approach to sexual orientation, addiction, obesity, athletic inclination, and even personality traits. Although genetic antidiscrimination promises broad categorical protections, its realization may favor a narrower, more normatively determined segment of genetics.dingbat

 

Acknowledgments:

Copyright © 2010 Georgetown Law Journal.

Jeffrey S. Morrow is a 2010 J.D. Candidate at Georgetown University Law School.

This Legal Workshop Editorial is based on the following Student Note: Jeffrey S. Morrow, Insuring Fairness: The Popular Creation of Genetic Antidiscrimination, 98 GEO. L.J. 215 (2009).

  1. Genetic Information Nondiscrimination Act of 2008, Pub. L. No. 110-233, 122 Stat. 881.
  2. 154 CONG. REC. S3372 (daily ed. Apr. 24, 2008) (statement of Sen. Levin).
  3. Associated Press, Can’t Quit Smoking? Blame Your Genes: New Studies Show ‘Double Whammy’ Link to Addiction and Cancer, MSNBC.COM, Apr. 2, 2008, http://www.msnbc.msn.com/id/23919596.

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