The Human Genome Project

These fears have been exacerbated by the Human Genome Project, the multinational effort, begun in the late 1980s, to obtain the sequence of all the DNA in the human genome. Once the complete sequence is obtained, it will in principle be easy to identify individuals with deleterious genes of a physical (or presumptively antisocial) type, and the state may intervene in reproductive behavior so as to discourage the transmission of these genes in the population. Such a policy could work special injury upon certain minority groups—for example, people of African origin, since the recessive gene for sickle-cell anemia occurs among them with comparatively high frequency. It could also threaten the disabled, since the only "therapy" currently available for most genetic or chromosomal diseases or disorders is abortion, and since identifying such fetuses as candidates for the procedure stigmatizes people who have been born with the handicap. In 1988, China's Gansu Province adopted a eugenic law that would—so the authorities said—improve population quality by banning the marriages of mentally retarded people unless they first submit to sterilization. Such laws have been adopted in other provinces and in 1991 were endorsed by Prime Minister Li Peng.

Negative eugenic intentions appeared to lie behind a July 1988 proposal from the European Commission for the creation of a human genome project in the European Community. Called a health measure, the proposal was entitled "Predictive Medicine: Human Genome Analysis." Its rationale rested on a simple syllogism—that many diseases result from interactions of genes and environment; that it would be impossible to remove all the environmental culprits from society; and that, hence, individuals could be better defended against disease by identifying their genetic predispositions to fall ill. According to the summary of the proposal: "Predictive Medicine seeks to protect individuals from the kinds of illnesses to which they are genetically most vulnerable and, where appropriate, to prevent the transmission of the genetic susceptibilities to the next generation." In the view of the European Commission, the genome proposal would make Europe more competitive—indirectly, by helping to slow the rate of increase in health expenditures; directly, by strengthening its scientific and technological base (Commission of the European Community).

Economics may well prove to be a powerful incentive to a new negative eugenics. In the United States, the more that healthcare becomes a public responsibility, paid for through the tax system, and the more expensive this care becomes, the greater the possibility that taxpayers will rebel against paying for the care of those whose genetic makeup dooms them to severe disease or disability. Even in countries with national health systems, public officials might feel pressure to encourage, or even to compel, people not to bring genetically affected children into the world—not for the sake of the gene pool but in the interest of keeping public health costs down.

However, a number of factors are likely to offset a broad-based revival of negative eugenics. Eugenics profits from authoritarianism—indeed, almost requires it. The institutions of political democracy may not have been robust enough to resist altogether the violations of civil liberties characteristic of the early eugenics movement, but they did contest them effectively in many places. The British government refused to pass eugenic sterilization laws. So did many American states; and where they were enacted, they were often unenforced. Awareness of the barbarities and cruelties of state-sponsored eugenics in the past has tended to set most geneticists and the public at large against such programs. Moreover, persons with handicaps or diseases are politically empowered, as are minority groups, to a degree that they were not in the early twentieth century. They may not be sufficiently empowered to counter all quasi-eugenic threats to themselves, but they are politically positioned, with allies in the media, the medical profession, and elsewhere, including the Roman Catholic church, to block or at least to hinder eugenic proposals that might affect them.

The European Commission's proposal for a human genome project provoked the emergence of an antieugenic coalition in the European Parliament that was led by Benedikt Harlin, a member of the West German Green Party. The Greens had helped impose severe restrictions on biotechnology in West Germany and raised objections to human genome research on grounds that it might lead to a recrudescence of Nazi biological policies. Guided by Harlin, the European Parliament's Committee on Energy, Research and Technology raised a red flag against the genome project as an enterprise in preventive medicine. It reminded the European Community that in the past, eugenic ideas had led to "horrific consequences" and declared that "clear pointers to eugenic tendencies and goals" inhered in the intention of protecting people from contracting and transmitting genetic diseases or conditions. The application of human genetic information for such purposes would almost always involve decisions—fundamentally eugenic ones— about what are "normal and abnormal, acceptable and unacceptable, viable and non-viable forms of the genetic make-up of individual human beings before and after birth." The Harlin Report also warned that the new biological and reproductive technologies could make for a "modern test tube eugenics," a eugenics all the more insidious because it could disguise more easily than its cruder ancestors "an even more radical and totalitarian form of 'biopolitics'" (European Parliament, Committee on Energy, Research, and Technology, pp. 23-28).

The Harlin Report urged thirty-eight amendments to the European Commission's proposal, including the complete excision of the phrase "predictive medicine" from the text. As a result of the report, which won support not only from German Greens but also from conservatives on both sides of the English Channel, including German Catholics, the European Commission produced a modified proposal that accepted the thrust of the amendments and even the language of a number of them. The new proposal called for a three-year program of human genome analysis as such, without regard to predictive medicine, and committed the European Community in a variety of ways—most notably, by prohibiting human germ line research and genetic intervention with human embryos—to avoid eugenic practices, prevent ethical missteps, and protect individual rights and privacy. It also promised to keep the European Parliament and the public fully informed via annual reports on the moral and legal basis of human genome research. Formally adopted in June 1990, the European Community's human genome program will cost 15 million ECU (about $17 million) over three years, with some one million ECU devoted to ethical studies (Kevles and Hood).

In the United States, apprehensions of the ethical dangers in the Human Genome Project found expression in the Congress across the political spectrum—from liberals who had long been concerned about governmental intrusion into private genetic matters to conservatives who worried that the Human Genome Project might foster increased practice of prenatal diagnosis and abortion. Among the Americans most sensitive to the eugenic hazards and the ethical challenges inherent in the project were a number of its leading scientific enthusiasts, particularly James D. Watson, the first head of the National Center for Human Genome Research, who considered it both appropriate and imperative that the American genome program stimulate study and debate about its social, ethical, and legal implications. In 1988, Watson announced that such activities would be eligible for roughly 3 percent of the National Center's budget. He told a 1989 scientific conference on the genome: "We have to be aware of the really terrible past of eugenics, where incomplete knowledge was used in a very cavalier and rather awful way, both here in the United States and in Germany. We have to reassure people that their own DNA is private and that no one else can get at it" (Kevles and Hood, pp. 34-35).

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