Dangerous Diagnostics And Their Social Consequences

Research in molecular biology and the neurosciences is increasing our ability to predict the incidence of an expanding number of diseases and conditions. Geneticists are beginning to isolate the genes that predispose people to common kinds of cancer, and attention has also turned to detecting susceptibility to complex conditions such as heart disease, leukemia, juvenile diabetes, mental illness, alcoholism, and Alzheimer's. The hope is to discover clues to these conditions before symptoms appear. The goal is to detect susceptible individuals--those who are "at risk." Reflecting the growing focus on the hereditary basis of disease, genetic testing is becoming a part of general medical practice--so much so that, in 1992, the American Medical Association recognized medical genetics as a separate subspecialty of internal medicine. Scientists should be aware of the potential abuses of the predictive information generated by their research and how such information is influencing social policy. The significance of this information in the 1990s stems from the current social and political climate--the increasing sense of crisis over the cost of health-care services, the prevalence of criminal violence, and the general state of the economy. In the field of health care, the Clinton administration has proposed reforms that call for cost containment and a rational distribution of benefits through changes in the organization of services. Meanwhile, the criminal justice system is struggling ever more urgently to deal with the growing public fear of crime. And employers, faced with economic survival, seek ways to avoid insurance costs. Economic and social imperatives are enhancing the social value of presymptomatic testing. In a society preoccupied with health-care costs, fetal diagnosis can be a form of preventive medicine, allowing family planning to avoid costly medical conditions. Mass screening can detect susceptibility to common diseases, allowing individuals to take preventive or therapeutic measures. But as programs are organized to detect those with an increasing range of predisposing conditions, they face clinical and social- policy dilemmas. The identification of specific genes allows the development of clinical tests for diseases well in advance of therapeutic possibilities. Thus, individuals at risk deal with difficult options. Should a healthy woman diagnosed as genetically susceptible to breast cancer undergo a prophylactic mastectomy? Or participate in trials of tamoxifen, an experimental cancer-prevention drug? For those diagnosed as predisposed to a hereditary disease, what are the implications for family planning? Such questions are assuming broader social dimensions as scientists seek biological sources of behavioral and personality traits. Geneticists originally promoted genome research for its importance in locating the genes for disease. But attention is now turning to the documentation and anticipation of psychiatric disorders and socially important behavioral traits. Research on the brain, for example, is focusing on the biological basis of addiction and aggression. Scientists have discovered correlations between the tendency toward violence and the levels of serotonin in the brain, revealing a genetic variation in serotonin levels mapped to chromosome 11. This opens the possibility of predicting those who may be predisposed to violent behavior by measuring serotonin or studying chromosome 11 in the fetus. Also, research on addiction suggests that the receptor sites for cocaine involve those regions of the dopamine system that are specifically associated with obsessive compulsive behavior. The disruption of this system favors compulsive drug taking and other tendencies that could prevent individuals from controlling violent behavior. Predictive possibilities are also emerging from studies of the brain using positron emission tomography (PET). Refinements in imaging technologies during the 1990s have expanded reliance on biological tests. Magnetic resonance imaging (MRI) can now be used effectively to study the function as well as the structure of the brain. Less costly and less invasive than PET, it is becoming much more widely applied. There is considerable popular support for the use of these diagnostic techniques for predictive purposes. A pervasive belief in the importance of biological predispositions encourages expectations that inherent qualities largely explain an individual's past performance and can be used to predict future behavior. Such expectations help to legitimate social policies and institutional practices based on biological predictions. The courts have been especially receptive to biological explanations. Several recent custody decisions, for example, have turned on whether genetic relationships should take precedence over other values. Establishing genetic relationships as the criteria for such complex decisions appears to be an easy way to clarify ambiguities and to permit the resolution of disputes with dispatch. Assumptions about genetic predisposition have also guided decisions about responsibility and punishment and encouraged efforts to predict and prevent future crime. Biological defenses are used to mitigate punishment on the assumption that biological predisposition precludes free will. Thus, some courts during the 1980s allowed brain images from PET scans to enter sentencing decisions. In 1991, a New York court for the first time admitted information from a PET scan in a trial to determine the sanity of a defendant who had thrown his wife out the window of their apartment. To support the insanity defense, the defendant's lawyers introduced a PET image revealing a cyst on his brain, arguing that this prevented the man from controlling his behavior. After specialists testified that PET was an established diagnostic tool, the judge accepted the information. Growing public fears of crime have stimulated interest in using biological indicators to predict who may be predisposed to violent behavior. The appeal of genetic prediction is apparent in both journalistic and scientific speculations. A writer for Science Digest wondered whether children who are suspected of being genetically prone to criminal behavior should be isolated just as defective cars are recalled to the factory (L. Taylor, "The genetic defense," Science Digest, November 1992, page 44). And in a 1992 editorial, Daniel E. Koshland, Jr., editor of Science, wrote about acts of criminal violence: "When [we] can accurately predict future behavior, we may be able to prevent the damage" (Science, 255:777, 1992). The appeal of genetic explanations--and of predictive testing--grows as the intransigence of social problems converges with disillusionment about the efficacy of existing social reforms. As economic tensions increase, so too do the social implications of predictive testing. Many people find themselves ineligible for health insurance benefits, or constrained to remain in their current jobs because they would lose their insurance if they were to move on. Cases of genetic discrimination call attention to the difficulties of protecting medical information. The military and the FBI maintain repositories of genetic data for purposes of identification. Pathology laboratories store blood samples that are potential sources of genetic information. While data banks contain genetic information about a growing number of individuals and their families, there are no uniform standards to control access to records, to ensure the privacy of genetic information, and to prevent its abuse. The Americans With Disabilities Act (1992) defines disability to include asymptomatic disease. Designed to prohibit discrimination in hiring, it limits pre-employment testing to the assessment of a person's ability to perform a job. But the legislation does not preclude the use of "sound actuarial data" as a basis of limiting health-care benefits. Thus, the standard underwriting assumptions of the insurance industry are not affected. And the scope of the issues covered by the act has yet to be tested. Meanwhile, the growing ability to predict diseases in asymptomatic people and the increasing information about future health risks are expanding health-care needs, with implications for reforms that are intended to control costs while ensuring universal access to medical services. Current economic incentives are bound to encourage health-care insurers and providers to demand predictive information from tests and to avoid high-risk patients. The challenge will be to ensure fairness in the coverage of genetic conditions at a time when pressures for cost containment are forcing health providers to find ways to classify and categorize individuals, and limit institutional obligations. The promise of "scientific" prediction has become increasingly seductive, for science appears to offer definitive answers to institutional dilemmas at a time when 14 percent of the gross national product is used to finance the health-care system, crime is regarded as a crisis, and employers are concerned about costs. Scientists themselves are feeding exaggerated public expectations. As they seek to improve their public image and communicate the excitement and the benefits of their work, they use rhetorical strategies that encourage the social appropriation of predictive biological information. Geneticists, for example, refer to the gene as a "Delphic Oracle," a "blueprint of life," a "medical crystal ball." They describe their work with deterministic metaphors: "Our fate is in our genes." Defining the genome as a "dictionary" or a "map," they suggest that science will reduce ambiguity in complex social situations, enhancing control over behavior as well as disease. Such promises clearly capture public interest, but in communicating their research, scientists must recognize that the use of scientific information depends on its relationship to social needs, that scientific findings are always interpreted in a cultural terrain and appropriated to support prevailing beliefs. Ultimately, the power of science depends less on questions of validity than on political and social concerns. And in the current social context, biological information is bound to have more and more powerful consequences for social policy and individual rights. Dorothy Nelkin is University Professor in the department of sociology and the School of Law at New York University; Laurence Tancredi is a psychiatrist and lawyer affiliated with NYU's School of Medicine. For further development of the themes in this essay, see the second edition of Nelkin and Tancredi's Dangerous Diagnostics: The Social Power of Biological Information (University of Chicago Press, 1994).

Dangerous Diagnostics And Their Social Consequences

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