Human Genetics in a Market Economy

Despite the specter of eugenics that some see in the Human Genome Project, many observers hold that its near-term ethical challenges lie neither in private forays into human genetic improvement nor in some state-mandated program of eugenics. They lie in the grit of what the project will produce in abundance: genetic information. These challenges center on the control, diffusion, and use of that information within the context of a market economy.

The advance of human genetics and biotechnology has created the capacity for a kind of individual eugenics— families deciding what kinds of children they wish to have. At the moment, the kinds they can choose are those without certain disabilities or diseases, such as Down syndrome or Tay-Sachs disease. Although most parents would now probably prefer just a healthy baby, in the future they might be tempted by the opportunity—for example, via genetic analysis of embryos—to have improved babies, children who are likely to be more intelligent or more athletic or better-looking (whatever such terms might mean). People may well pursue such possibilities, given the interest that some parents have shown in choosing the sex of their child or that others have shown in the administration of growth hormone to offspring they think will grow up too short. In sum, a kind of private eugenics could arise from consumer demand.

Many commentators have noted that the torrent of new human genetic information will undoubtedly pose challenges to social fairness and equity. They have emphasized that employers may seek to deny jobs to applicants with a susceptibility—or an alleged susceptibility—to disorders such as manic depression or illnesses arising from features of the workplace. For example, around 1970, it came to be feared that people with sickle-cell trait—that is, who possess one of the recessive genes for the disease—might suffer the sickling of their red-blood cells in the reduced-oxygen environment of high altitudes. Such people were unjustly prohibited from entering the Air Force Academy, were restricted to ground jobs by several major commercial air carriers, and often were charged higher premiums by insurance companies. Life and medical insurance companies may well wish to know the genomic signatures of their clients, their profile of risk for disease and death. Even national health systems might choose to ration the provision of care on the basis of genetic propensity for disease, especially to families at risk for bearing diseased children (U.S. Congress, Office of Technology Assessment; Kevles).

In response to these threatening prospects, many analysts have contended that individual genomic information should be protected as strictly private. However, legal and insurance analysts have pointed out that insurance, and insurance premiums, depend on assessments of risk. If a client has a high genetic medical risk that is not reflected in the premium charged, then that person receives a high payout at low cost to himself or herself but at high cost to the company. The problem would be compounded if the person knows the risk—while the company does not—and purchases a large amount of insurance. In either case, the company would have to pass its increased costs to other policyholders, which is to say that high-risk policyholders would be taxing low-risk ones. Thus, insisting on a right to privacy in genetic information could well lead—at least under the largely private system of insurance that now prevails in the United States—to inequitable consequences.

American legislatures have already begun to focus on the genuine social, ethical, and policy issues that the Human Genome Project raises, particularly those concerning the use of private human genetic information. In the fall of1991, a U.S. House of Representatives subcommittee held hearings on the challenge that such information posed to insurability. About the same time, the California state legislature passed a bill banning employers, health service agencies and disability insurers from withholding jobs or protection simply because a person is a carrier of a single gene associated with disability. Although California Governor Pete Wilson vetoed the bill, it was a harbinger of the type of public policy initiatives that the genome project no doubt will increasingly call forth. The Human Genome Project, like most of human and medical genetics, is less likely to foster a drive for a new eugenics than it is to pose vexing challenges to public policy and private practices for the control and use ofhuman genetic information.

DANIEL J. KEVLES (1 995) BIBLIOGRAPHY REVISED

SEE ALSO: Eugenics and Religious Law; Genetics and Human Behavior; Genetics and Human Self-Understanding; Genetics and Racial Minorities; Holocaust; Human Nature; Judaism, Bioethics in; Minorities as Research Subjects; Race and Racism; and other Eugenics subentries

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