Genetic Testing's Political Implications Must Be Addressed

The recent public apology by President Clinton on behalf of the United States government to survivors of the Tuskegee syphilis experiments was intended to close the door on one of the most scandalous instances of officially sanctioned scientific misconduct in the annals of biomedical research. Yet, while the apology may bring closure to the particular incident, it stands as a stark reminder of the history that has led many minorities to distrust supposedly objective scientific research. Betrayed both by the research establishment and by the government, minority communities are left to wonder if the Tuskegee experiment is not simply an extreme and visible example of an ongoing betrayal for which there will be no apology. This problem is especially acute owing to the likelihood of increased biomedical testing arising from the Human Genome Project sequencing and mapping initiative. Communities of color have not forgotten the debacle of sickle-cell testing programs more than two decades ago. Begun as an arguably well-intentioned public-health initiative to screen African Americans for susceptibility to sickle-cell anemia, testing for sickle-cell disease rapidly transmogrified into testing for carrier status, or sickle-cell trait. Dubious scientific results were soon used as justifications to bar African Americans from areas of employment, such as military flight duty, in which sickle-cell trait was considered to be a health risk. Legal implementation of coercive or mandatory testing programs solidified the perception that the programs were merely an excuse to stigmatize African Americans, particularly when testing of persons of southern European origin-also at increased risk for sickle-cell disease-was not mandated. In hindsight, the failure to implement careful scientific reviews, to involve community leaders in programmatic design, to integrate counseling and education with testing, and to take seriously nonscientific political and social constraints have made the sickle-cell testing program a model of how not to implement a public health initiative. With the specter of myriad new genetic tests now on the horizon, thoughtful commentators have questioned whether the flaws apparent in the sickle-cell program were correctable oversights or systemic failures that are bound to recur whenever public perception of genetic traits is at issue, and particularly wherein they form the basis for law-making. The effect of such perceptions, if embodied in law, may be broad-ranging and exceptionally subtle. For example, the U.S. Supreme Court has declared legally suspect laws that discriminate on the basis of "immutable"-which is to say genetic-characteristics such as pigmentation. Disparate treatment on such grounds is viewed as unfair because the characteristic was not chosen by the individual and is difficult or impossible for the individual to alter. What seems odd about such a legal position is not so much the declaration that discrimination on the basis of pigment constitutes legally cognizable unfairness, but that the Supreme Court chose not to recognize as equally "immutable" any other circumstances over which the individual may have little control, such as a history of abuse, poor education, or economic impoverishment. The clear message of such decisions seems to be that, before the law, genetic circumstances matter more than do other circumstances. The somewhat bizarre consequence of this assumption is that other groups that perceive themselves as oppressed or disenfranchised have begun attempting to find a similarly "immutable" genetic basis for the characteristic believed to mark them for disparate treatment. As a notable example, a mad scramble to identify and isolate a scientifically respectable "gay gene" has been under way for some time; this would perhaps offer a biological basis to assert that homosexuality stems from an inborn predisposition to a particular sexual orientation. But this research both arises out of and perpetuates a social milieu in which biological determinism is found to be a credible basis for legal status. Some gay activists have seized upon the research in an attempt to gain constitutional protection for their behavior as an "immutable" characteristic. Others have recognized that such a justification may be a dangerous course of action: Despite the legal advantages to be gained from "immutable" status, additional discrimination could arise from characterizing the gay lifestyle as an inexorable biological compulsion. In the long run, the better strategy might be to draw upon constitutional standards of rights and individuality meant to protect the disadvantaged and characterize their circumstances as an autonomous choice that should be legally respected, rather than as an accident of heredity. But the rhetoric of biological "immutability" now found in the law makes the latter course a difficult option to pursue. Genetic arguments have also begun to appear as refutation to legal recognition of disadvantage. Some legal commentators are now arguing against laws and regulation that appear to impede "free market" competition, on the basis that humans are genetically conditioned to competitive self-interest by millions of years of evolutionary selection. Since humans are programmed to self-interest, the argument goes, regulatory attempts to inhibit it are doomed to failure. Indeed, such initiatives are "unnatural" attempts to frustrate the genetically ordained order. By the same token, affirmative-action programs or other attempts to assist minority groups are similarly unnatural and futile, as humans have been genetically programmed by natural selection to engage in racial discrimination. The blatant scientific fallacy in such arguments should be readily apparent. Demonstration of genetic causality in such arguments is entirely foreclosed by a neat tautology: If we observe that humans are inclined to self-interested behavior, it is because they are genetically predisposed to do so. What is the proof of the genetic predisposition? Why, the observation that humans are inclined to self-interested behavior, of course. Such an argument is utterly unfalsifiable in the Popperian sense, as the conclusion must be assumed. It thus bears more relation to an explanatory mythology than to a testable scientific hypothesis. But beyond the scientific and logical inadequacies of such arguments lies a deeper and ultimately more important flaw. Even if we assume that human self-interest were in fact genetically programmed and ignore whatever role developmental and environmental factors might play in the expression of such programming, it by no means follows that the law must accommodate such programming. Scientific conclusions inform legal decision-making but do not dictate the outcome of such decisions, because legal process is concerned not with empirical facts but with accommodating differing viewpoints in a diverse society. Scientific research may tell us, for example, that a certain compound is carcinogenic, but it cannot by itself tell us whether or not society ought to produce that compound, just as scientific investigation into the identity of the perpetrator of a crime cannot alone tell us whether we should hold the accused guilty of an alleged crime. In each instance, legitimate and compelling nonscientific interests may dictate the outcome of the proceeding. Similarly, there may be legitimate and compelling nonscientific interests beyond the expression of either pigment or rational self-interest that should determine society's legal stance on discrimination. Nonetheless, the argument from biological determinism remains a powerful justification for political ideology, in large part because it cloaks itself as objective scientific fact. It has previously served to justify slavery in the 19th century and segregation in the 20th. It similarly served to deny universal suffrage and perpetuate coverture laws, as women were deemed genetically unsuited to the mental requirements of voting, entering into contracts, holding property, and testifying in court. It has justified miscegenation and marriage licensing statutes, and immigration quotas to keep "feeble-minded" and genetically inferior southern Europeans from diluting America's Anglo-Saxon stock. At its most macabre, it has been cited to support incarceration and involuntary sterilization of the "feeble-minded" and "morally degenerate." Small wonder that populations that are already disadvantaged fear the rise of a "new geneticism," when biological determinism has so frequently been used to cloak oppressive political agendas in the past. In the present era of restricted federal budgets and severe cutbacks in social programs, some observers may wonder how funding for the "big science" Human Genome Project continues to be a congressional priority. Certainly the desire for medical applications of the knowledge plays a role, as does the profit interest of pharmaceutical and related industries. Yet some observers have wondered if such funding may not in some instances fit the same political agenda that has led to reduced funding for federal programs intended to aid the disadvantaged. The inclination of many scientists may be to dismiss such fears as either groundless or irrelevant to the question of research. So long as the science done is sound and meets the scientific communities' rigorous standards of peer review and reproducibility, they argue, the knowledge gained will ultimately benefit everyone. The truths uncovered by research are neutral, it is said, and are unrelated to political maneuvering outside of the laboratory. Yet such an attitude unwisely ignores not only the intimate connection between observation and interpretation of facts, but also the social construction of those facts once they leave the laboratory. In the process of social decision-making, fears both well-founded and ill-founded converge with reality. This has already been demonstrated in repeated controversy over federal funding of research into the genetic bases of violent behavior, which many minority communities feared could be an excuse for oppressive social programs. As a consequence, the funding for such research has more than once been jeopardized. Dan L. Burk holds advanced degrees in molecular biology and in law. He is an associate professor of law at Seton Hall University in Newark, N.J., where he teaches courses in law and genetics and biotechnology law in the Health Law and Policy Program. Such antagonism toward controversial research is likely to continue, particularly since the scientific establishment as a whole has shown poor success in recruiting a proportionate share of minorities into research positions, and therefore relatively few minority scientists are available as trusted interpreters to explain the research to the larger community. If the scientific community does not find some common ground for discussion with communities of color, the latter communities will continue to distrust the motivations behind the Human Genome Project and similar biomedical initiatives. And as that distrust becomes translated into political reality, then scientists who have not been alert to the broader implications of their research may find that those implications have led to regulation or funding withdrawals that cannot be ignored.

Genetic Testing's Political Implications Must Be Addressed

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