What's So Special About Genetic Discrimination? Congress Passes a Revealing Bill

Earlier this month, Congress sent the President a bill, entitled the "Genetic Information Nondiscrimination Act" (or "GINA"), which Bush is expected soon to sign into law. The law would prohibit employers, as well as insurance companies, from discriminating on the basis of a person's genetic test results showing her predisposition to illnesses, such as cancer or heart disease. Under GINA, employers' decisions about hiring, firing, and promotion, as well as insurance companies' decisions about subscriber eligibility and premiums, could not rest on genetic information of this sort.

GINA has much to recommend it. It fights discrimination against vulnerable people, a worthy battle. Genetic discrimination, moreover, seems very much like uncontroversially invidious race and sex discrimination, as both race and sex have genetically-determined features. GINA also has the instrumental benefit of removing at least one disincentive to genetic self-testing: the worry that employers and insurers might learn our test results and impose adverse consequences upon those who carry disfavored genes. With a law prohibiting such action, people will feel free (or freer) to seek out and discover genetic information that could help enhance their own health and lives as well as medical science more generally. Discovering that she has the breast cancer gene, for example, could motivate a woman to get an elective double-mastectomy and thereby increase her odds of living a long, cancer-free life.

One surprising benefit of GINA is that it appears to be so uncontroversial. State laws that resemble it have been passed in a majority of states (31 cover employers; 41 cover health insurers). Most dramatically, the bill passed the U.S. Senate unanimously and the House nearly unanimously (with the only "no" vote coming from Ron Paul, who opposes what he calls "intrusive federal legislation").

If GINA is such a good thing, then why am I surprised that it has not engendered much controversy? The first answer is that the grounds on the basis of which health insurers do tend to discriminate (lawfully) are not meaningfully distinct from the grounds that will soon be barred by GINA.

A second answer is that I am surprised because ordinarily, legislation that protects the vulnerable among us encounters resistance from the less vulnerable, who do not necessarily want to pay for someone else's justice.

Genetic Predispositions and Pre-existing Conditions

One of the reasons that both Democratic candidates for President have pressed for extensive healthcare reform is that very sick people often have a difficult time affording the soaring medical bills that inevitably come their way. Even those who can afford health coverage may find that outside the protection of employer group health plans, insurance companies will deem them ineligible or exclude conditions that they acquired prior to having signed up. Elizabeth Edwards alluded to these realities when she noted that as fellow cancer survivors, neither she nor Republican Candidate John McCain would be able to get health insurance under the individual-based approach that McCain champions.

Insurance companies, as profit-seeking enterprises, will foreseeably tend to exclude everyone who is likely to take more money (in the form of covered medical expenses) than he or she pays (in the form of premiums). For this reason, a health insurance company – if it is able to do so – will fill its rolls with people who are young, healthy, and likely to remain that way for the foreseeable future.

Though any of us could become sick at any time (this is why even healthy people tend to want health insurance), some people (those who have been very sick before) are more likely than others to need medical care in the near future. By combining the healthy and the sick in one big plan, though, insurance companies can perform a social good (by spreading risk) while making a profit (by capitalizing on the infrequency with which low-risk events occur in large, heterogeneous groups of people). If insurers can decide whom to insure (as they generally can, outside of employer-provided group health plans), then it is predictable that the first to find themselves excluded will be those who are likely to cost the insurance companies money.

Though that state of affairs is unfortunate, it is easy to understand why health insurers seek to avoid sick customers. Therefore, if we want everyone to have health insurance, a first step is to end the individual-based approach to subscription by prohibiting insurers from denying coverage to potential subscribers based on their medical histories. So far, however, we have not taken this step. To do so would, at the moment, be controversial. Consider, however, how much genetic discrimination – which the law will probably soon prohibit – resembles the current exclusion of sick people from insurance rolls.

Assume that you have a genetic predisposition to develop a rare but devastating brain disease called "Brainosis." An insurance company might, if it learned that you had this genetic marker, choose either to charge you a higher premium (to protect itself against the increased likelihood of having to pay bills for Brainosis treatments) or, if the odds of your becoming ill are high enough, to exclude you from coverage altogether. And if it could, an insurance company might, as a condition of providing health coverage, take a DNA sample and test all applicants for the presence of the Brainosis marker, to determine in advance whom to charge the highest premiums or whom to exclude altogether.

By treating you in this way, the insurer would be doing exactly what it does when it refuses to cover a person who has already had cancer in the past: it is predicting, based on what it currently knows about you, that you are likely to cost more than your premiums are worth to the company. A sick person could become very healthy or show no further symptoms, just as a person with a genetic predisposition might remain illness-free. But insurance companies would prefer not to take the chance, if they have a choice. GINA would leave companies the choice vis-à-vis people with pre-existing health conditions but deny that choice vis-à-vis people with disfavored genetic predispositions. Why the difference?

Perverse Incentives: One Possible Reason to Distinguish Genetic Predispositions from Pre-Existing Conditions

One possible explanation is the differential need to create the right incentives for those seeking health insurance. In the case of people who have genetic predispositions to particular illnesses, they may (in the absence of legal protection) be motivated to avoid testing altogether if they risk discrimination on the basis of the results. To the extent that it is better for society as a whole, and for individuals within it, to be as informed as possible about genetic markers for disease, we want to minimize the avoidance incentive. We can do this by prohibiting disparate treatment of those who test positive for genetic predispositions to debilitating illness.

In the case of a pre-existing condition, by contrast, there may be nothing that a person who is sick can do (or avoid doing) to make herself less likely to be excluded by an insurer. Unlike in the case of genetic testing, in other words, you will generally know that you are sick (because you do not feel well) without having to undergo any special test. There is therefore no need to induce you to take such a test by protecting you against potential discrimination in the event that you "fail" the test.

Though this distinction may have some force, it is nonetheless the case that people might – even if they feel ill – avoid seeing a doctor until they have health insurance. Without a prior diagnosis, you might sometimes be able to characterize your illness as new, after you are insured. Once you have visited a doctor for your illness, however, there is no denying that the condition is "pre-existing" from that point on.

The perversity of the incentives here is clear: a sick person is avoiding treatment and likely becoming sicker (perhaps irreparably so) in order to avoid being penalized by an insurer for having a pre-existing condition. Such behavior is at least as destructive as avoiding genetic testing to preserve one's eligibility for insurance.

Furthermore, if an insurer were allowed simply to perform its own qualifying medical exam and its own pre-coverage genetic testing that would effectively remove any incentive to delay seeing a doctor or to avoid testing, by eliminating the payoff for such delay and avoidance. In other words, in the cases of both current health status and genetic information, there are ways of removing perverse incentives without prohibiting discrimination on either basis. Yet we are poised to prohibit discrimination on one ground, but not on the other. The question remains: Why?

John Rawls's Veil of Ignorance

In his book, A Theory of Justice, moral philosopher John Rawls designs a thought experiment to determine principles of justice to guide our conduct as a society. The thought experiment asks us to imagine that we are deciding our principles from behind a "veil of ignorance." In this hypothetical original position, "no one knows his place in society, his class position or social status, nor does anyone know his fortune in the distribution of natural assets and abilities, his intelligence, strength, and the like….."

Once we operate from behind such a veil, Rawls claims, we can avoid choosing rules and principles that maximize our own personal wellbeing at the expense of others', because we no longer know who we will be in the world. If you imagine that you – as likely as not – might wake up tomorrow with much less brain power or physical prowess than you had today, then you are bound to feel a much greater sensitivity to those who are in fact less gifted than you in these respects, and accordingly to express less bias toward your own needs in determining the right and just way to structure society.

Though in theory an appealing thought experiment, the veil of ignorance has weathered its share of criticism on the ground that people are incapable of imagining themselves existing under very different life circumstances from those under which they actually exist. For that reason, laws prohibiting discrimination have tended to face obstacles and resistance from those benefiting from the discrimination in question. The same failure of empathy that generates the tendency to discriminate in the first place is likely, for most people, to prevent a sincere assessment of the inequities that have helped rather than hindered their own lives. The veil of ignorance may, in other words, be an unmitigated fiction.

If the critiques are fair, then the "veil of ignorance" thought experiment might fail because people are unable sincerely to place themselves behind such a veil. Nonetheless, if Rawls is overly optimistic about the human imagination but correct about the conditions under which we are able to design equitable principles, then a real veil of ignorance could be a very effective tool for producing just rules. If we were able to make the veil a reality, then we might see people enthusiastically embracing principles of fairness that would otherwise elude them or that would, at a minimum, come with great controversy and equivocation.

Our current relationship to genetic predisposition information may provide the closest thing we have to a veil of ignorance.

Though some of our genetic endowment may be evident to us without specific testing, much of it remains a mystery. Even if a person is diagnosed with a particular condition, for example, she must still undergo testing to find out whether she also carries a genetic predisposition toward that condition (which may be useful to know for prediction purposes even in the presence of an actual illness). And for many other conditions, we each have no idea what vulnerabilities are written into our respective codes. If you have ever visited a genetic counselor, for example, you have likely learned that you either are or are not a carrier of a number of conditions some of which you may have never even heard before.

In sum, in relation to our genetic endowments, we are generally – in the absence of testing – cloaked in a veil of ignorance. In this position, it is quite natural that we are inclined to oppose any and all discrimination, no matter how "rational," with respect to those qualities of which we are ignorant. Though employers and health insurers can save money – for themselves and for their genetic-lottery-winning customers – by excluding or differentially charging genetic-lottery-losing customers, each voter can imagine that she is the one with disturbing genetic markers and is therefore willing and able to support a prohibition against such discrimination.

This near-universal ability of voters to put themselves in the place of future genetic discrimination victims may go a long way in explaining why GINA has had such spectacular success in the House and the Senate and appears likely soon to be signed by the President.

So What?

If genetic discrimination presents us with a unique opportunity to see the "veil of ignorance" in action, then doesn't its very uniqueness preclude its utility beyond explaining this one-time event? In my view, the answer is no. Once we understand the significance of GINA as a uniquely revealing example of legislation behind a veil of ignorance, then we can better appreciate the justice of other, morally indistinguishable kinds of legislation. A prohibition against discriminating (in premiums or eligibility) against people who have pre-existing conditions could serve as one excellent example. If Senator McCain (who, along with the other active presidential candidates, did not vote on the bill) supports GINA, he might legitimately be asked to explain why he opposes the health insurance reforms urged by his Democratic opponents. (And if McCain opposes GINA, that too might interest the voters, given the otherwise overwhelming support for the measure).

To have a true-to-life example of the veil of ignorance in action, then, is a gift. Perhaps GINA and John Rawls can together help pave the intellectual and moral path to a more just and equitable society – one in which each of us finds it less of a leap to put ourselves in the place of a person denied insurance, or another crucial benefit, through no fault of our own.