Genetics-Based Testing Could Create A Biologic Underclass

[Editor’s note: Sophisticated biological tests that can uncover latent problems or predict future diseases have been developed over the past few years. Such tests have important clinical applications, but they also have found their way into nonclinical contexts in which they provide unprecedented threats to our traditional concepts of privacy and personal autonomy. So say Dorothy Nelkin and Laurence Tancredi, coauthors of a new book, Dangerous Diagnostics: The Social Power of Biological Information (New York, Basic Books Inc., 1989).] Nelkin, a professor of sociology at New York University, says one of the aims of the book is to generate discussion and open debate about the social implications of new diagnostic tools emerging from genetics and the neurosciences. “There’s a growing concern regarding the implications of predictive testing,” Nelkin said during a recent tele-phone interview. Throughout her career as an educator and writer, Nelkin said, she has tended to focus on those areas in which science and society intersect. Writing the book, she said, “seemed like a natural evolution of my interest in the social implications of science and technology. I’ve tended to focus on disputed areas of science, human conflicts between science and human values.” In the following excerpts from their book, Nelkin and Tancredi— Kraft Eidman Professor of Medicine and the Law and director of the Health Law Program at the University of Texas Health Science Center in Houston—offer examples of potential misuses of biological information and prescribe steps that should be taken to head them off J In front of a drive-through testing center on a busy highway, a sign advertises the tests that are given there: “emissions, drugs, intelligence, cholesterol, polygraph, blood pressure, soil and water, steering and brakes, stress and loyalty.” In this single image, a New Yorker cartoonist has identified and described a ubiquitous trend in American society: the increasing preoccupation with testing. Like fast food or gasoline, testing is offered as a commodity; one can drive up, be tested, and drive away. The center does not differentiate people from machines; both are objects that can be reduced to parts, examined, and assessed. Nor does it distinguish people’s physical health from their behavior. Blood pressure, deviance, intelligence, integrity, political loyalty—all can be routinely tested, just like the brakes of a car. Finally, most of the tests available in this drive-in station are intended not simply to diagnose manifest symptoms of illness or malfunction but rather to discover the truth behind appearances, to detect conditions that are latent, asymptomatic, or predictive of possible future problems. These are precisely the characteristics of the “new diagnostics”—tests that are emerging from research in genetics and the neurosciences. This research is uncovering the inner structure and function of the body as well as the inherited qualities that seem to influence the course of life from childhood to old age. Discovereries in these fields are accompanied by diagnostic technologies that have expanded our ability to detect subtle biological differences among individuals and to predict many diseases before symptoms appear.... Harmful Awareness Yet information from tests is not always beneficial or even benign, for in many cases nothing can be done to prevent the predicted disease. What will happen to a 20-year.old who discovers that he is likely to develop a fatal disease in middle age? The genetic flaws detected by tests will not necessarily translate into functional impairment; yet knowing about the potential problem without being able to prevent it will be a source of extreme anxiety for him. Moreover, it could subject him to considerable discrimination. He may be denied a job, and his insurance costs will surely increase. Even if something can be done to prevent the manifestation of a predicted condition, awareness of the predisposition can be used in ways that harm the individual. A diagnosed genetic vulnerability to heart disease may encourage a preventive lifestyle, but the prediction itself could affect a person’s career. After all, tests have been abused, serving, for example, as a means to justify racial or gender bias, to legitimate arbitrary exclusionary practices, and to enhance institutional power with little regard for the rights or personal fate of individuals.... tween diagnostic screening and Clinical diagnosis is important in considering the use of the new [diagnostic] technologies. Within the clinical context, physicians use diagnostic technologies to obtain data about an individual’s physical or mental status. When a patient has specific complaints, the physician tries to find a scientific explanation and to locate a cause. In screening, however, the same technologies become a means of identifying a population of individuals potentially at risk so as to influence their behavior. For example, genetic screening of potential carriers of Tay-Sachs disease (a fatal hereditary disorder of lipid metabolism) is a way to identify those who may perpetuate the trait in order to provide proper consultation prior to pregnancy. Prenatal screening for genetic disorders is a way of providing parents with the option of terminating the pregnancy if the condition is sufficiently serious. And genetic screening in the workplace is a way of identifying those most susceptible to toxic chemicals so as to prevent harmful exposure. In other words, the purpose of screening is to reveal conditions that are not yet manifest in order to intervene by taking preventive measures.... Testing is ultimately a form of labeling, of distinguishing among individuals and placing them within specific categories based on biological criteria. While scientific knowledge provides a rational basis for classification, it also opens the way to discrimination, stigmatization, and vulnerability to control. Once a person is labeled as having a specific condition, or even a predisposition to one, others respond accordingly, attributing subsequent behavior or physical manifestations to that condition.... The label itself may accurately describe a specific condition, but it will also create a more generalized response to the person. Those in authority are likely to ignore the demands and dismiss the concerns of an individual labeled "ill." A woman diagnosed as predisposed to depression may find her employer her physician, and her family consistently associating her concerns with that underlying personality defect. A dissatisfied employee, whose medical record shows a predisposition to manic depfession, can be categorized as crazy, his complaints delegitimized as a manifestation of the disease. He may not necessarily become manic-depressive.... Diagnostic labeling can also intrude on privacy. Data banks today contain considerable personal information about a large number of people. In some states information on hospitalized mental patients is stored in state files. Genetic registries record birth defects. The use of DNA tests in the courts implies the need for a national DNA data bank. Indeed, the FBI is creating such a bank, containing the DNA fingerprints of suspected criminals. While the purpose is limited to criminal investigations, stored DNA specimens collected for one purpose can be used for another purpose unless the samples are destroyed. Current advances in genetics and the neurosciences offer increased possibilities of storing biological information. Mapping the human genome will eventually make it possible to register an individual’s genetic composition at birth. One can easily envision families demanding information about their “genetic roots,” or commercial firms selling genetic information to interested agencies, such as insurance companies or the police. Questions of access to test results will juxtapose the privacy of individuals against the interests of relatives, employers, or organizations. Do members of a family have a right to information about the biological status of their relatives? Should a physician have the right, or perhaps the obligation, to communicate critical information about genetic disease to family members who may be similarly afflicted? Should people seeking to adopt a child be able to probe the genetic history of children available for adoption in order to “shop” for an appropriate match? If the interests in biological information are sufficiently compelling, the privacy of individuals may well be compromised. In the Tarasoff case in 1974, a California court ruled that information provided by a patient in confidence to a psychotherapist must be disclosed if that information reasonably suggests that the patient is likely to injure another party.... Compelling Information Although the Tarasoff decision dealt specifically with psycho-therapeutic relationships, the principle of duty to protect third parties has been extended beyond that situation. Thus Tarasoff-type arguments have been used to support the testing of vulnerable populations for AIDS and to inform potentially injured third parties. It is argued that the compelling social interest to prevent the transmission of AIDS should override concem about individual privacy. Similarly, in some circumstances, data from biological tests could be viewed as sufficiently compelling to warrant informing family members or employers, with little regard for individual rights. An airline pilot found to have, a family history of a disabling genetic condition, for example might be forced to undergo genetic testing or lose his license to fly. Predictive tests can also circumscribe the choices of employees, extending the boundaries of corporate jurisdiction into family and personal life. We have seen how fetal-protection policies have constrained the reproductive decisions of some working women. Corporate interests also extend to personal habits such as smoking, drug use, and exercise—all believed to bear on a worker’s performance. Employers and company physicians now ask most applicants whether they have any physical or psychological conditions that.might impair their ability to work. It is not a big step to inquire about genetic predispositions. As the sophistication and scope of testing for genetic markers increase, corporations could also justify routine testing of prospective employees for their predisposition to late-onset conditions that might someday impair them or result in chronic disabling conditions that would place economic burdens on health insurance coverage paid by the companies. Would corporate resources such as special training programs be invested in those individuals with “bad” markers? Can the right to be employed depend on having the “right” genes? Companies insure workers’ dependents as well. As genetic linkage tests become available to diagnose predisposition to disease, can companies use such tests to deny insuring employees or their families? Questions Of Access The significance of diagnostic information rests, of course, on how it will be used. Considering the rapid development of diagnostic capabilities, there has been little concurrent discussion about the potential employment of tests in nonmedical contexts, the question of who should have access to biological information, and the obligations of avoiding abuse. Concerns, however, are beginning to emerge. The American Society for Human Genetics, for example, has proposed guidelines to prevent genetic discrimination. Members of the European Parliament have questioned the European Commission’s plan to integrate research efforts on the mapping of the human genome. Critics in the Parliament have insisted that the social and ethical implications of a “predictive medicine program,” the potential for misuse of scientific knowledge, and, in particular, its eugenic implications, be addressed prior to undertaking the research... Developing Criteria As sophisticated tests become available to detect more and more subtle conditions, the guidelines for genetic counseling should be reconsidered. Many genetic conditions may never be burdensome or significantly disabling. Criteria must be developed for defining and assessing the seriousness of diagnosed conditions and the probability of disease and its disabling consequences. Increased testing also calls for a clearer definition of professional responsibilities. Professional use of tests could be limited, for example, to cases where it is clear that medical intervention or preventive measures will benefit the individual. At the very least; the fiduciary relationship involved in medical practice suggests that doctors should warn their patients not only about the availability of tests, but also about the possible social consequences of being tested. Physicians may even be called upon to counsel patients not to obtain biological information where nothing can be done to ameliorate a suspected condition. The power of testing also calls for clarifying the role of those medical professionals who work in nonclinical settings. Physicians in private companies or public schools currently operate under loosely constructed constraints. There are few ways to challenge their decisions. Their presumed loyalty tothe ethical codes of their profession is belied by theirconflicting obligations. As testing enhances their power, policies must be developed to verify professional judgments and to inform affected individuals so that their needs and interests will prevail. The professional responsibility of physicians should also extend to influencing institutional policy concerning the use of tests. They should educate administrators who use tests to the appropriateness, statistical relevance, and practical limits of diagnostic information. Considering the type of information revealed by new technologies and the development of data banks to store such information, it is critical to strengthen the laws and policies protecting privacy. Such policies must control access to information and limit its use so as to protect the rights of individuals. There are certainly precedents for such legislation. When Congress created the U.S. Census, it placed narrow restrictions on the use of the data collected by the Census Bureau. Similarly, the broad implications of biological data suggest that access to sensitive test results should be limited to those who have compelling social need for such information. And except in the most unusual circumstances, the individual tested should control the use of the test results. A Call For Policy Finally, policies should be developed to prevent, discrimination against those who are tested and found to be predisposed to disease. Those already employed or insured have some protection; but few policies or practices, such as high-risk insurance pools, subsidized health care services, or employment alternatives, are in place to protect those excluded on the basis of biological characteristics or to provide them with viable options. Such social policies are imperative, for the most important implication of biological testing is the risk of expanding the number of people who simply do not fit. The growing scientific knowledge about genetics and the brain is serving to refine biological diagnosis, and tests have greatly improved in their sensitivity and accuracy. But even as tests. increase in certainty and extend the range of what they can predict, questions of interpretation will remain. What degree of correlation between existing markers and subsequent physical or behavioral manifestations is necessary before taking social action such as exclusion from work, tracking in special education programs,. or establishing competence to stand trial? How do we balance the institutional need for stability against the rights of the individual? What is to be defined as normal or abnormal, able or disabled, healthy or diseased? And whose yardstick should prevail? Perhaps most important, even if there were perfect predictive information, we should not underestimate the dangers of a new eugenics. If biological tests are used to conform people to rigid institutional norms, we risk reducing social tolerance for the variation in human experience. We risk increasing the number of people defined as unemployable, uneducable, or uninsurable. We risk creating a biologic underclass.

Genetics-Based Testing Could Create A Biologic Underclass

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