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Dangerous Diagnostics: The Social Power of Biological Information.

Nancy G. Slack is Professor of biology at Russell Sage College. She is currently visiting research scholar at the Yale University School of Medicine, Section of the History of Medicine.

Dangerous Diagnostics: The Social Power of Biological Information. By Dorothy Nelkin and Laurence Tancredi. New York: Basic Books, 1989. 217 pp. $18.95 cloth.

Biomedical technology has been moving so fast in the last several years that new diagnostic tests appear every week. Medical and nonmedical institutions alike have become increasingly involved in testing. Some of these tests can be lifesaving, but diagnostic tests are now running far ahead of therapeutics. PKU testing at birth has made possible the prevention of mental retardation in many children, but new genetic tests for Huntington's Disease can only proclaim that the carrier Will be a certain future victim of a neurological disease for which there is no treatment.

Dangerous Diagnostics discusses a host of new techniques, including MRI (Magnetic Resonance Imaging) and PET (Positron Emmission Tomography), which detect both structural and functional abnormalities in the brain, and techniques that scan DNA sequences to find markers locating genetic disorders. These tests are now available to diagnose both present and potential diseases, neurological and even behavioral disorders. The use of another imaging technology, CEEG (Computer Electro Encephalograms), is becoming an accepted part of psychiatric practice. Presymptomatic detection of psychiatric disorders such as schizophrenia may be possible with such imaging technology, prompting psychiatric hospitals to purchase CEEG and PET equipment, the latter at great expense. Diagnostic testing is also being increasingly used for nonmedical purposes by schools, factories, and the courts, as well as by insurance companies, and in these social contexts the authors see potential and even present dangers.

Dorothy Nelkin, professor of sociology at New York University, is a well-known sociologist of science and author of several recent books. Laurence Tancredi is professor of Medicine and the Law and director of the Health Law Program at the University of Texas. They bring their complementary expertise to bear on the problems involved in using these burgeoning diagnostics capabilities.

Their exposition of tests is already out of date; every issue of Diagnostics and Clinical Testing offers new ones-markers for Sudden Infant Death Syndrome (SIDS), for example (January 1990). The same issue discusses the use of a new diagnostic test for the Lyme Disease spirochete and another to predict future prostate cancer. A recent publication (22 January 1990) for physicians, nurse practitioners, and midwives from Boston University School of Medicine's Center for Human Genetics lists prenatal diagnosis for eighteen genetic disorders now available by routine DNA methods, including same-day diagnosis for cystic fibrosis after amniocentesis.

Few would argue that the development of such tests is not in the best interests of parents whose infants may be at risk. The availability of testing for fatal and seriously debilitating genetic diseases using amniocentesis or chorionic villi sampling allows parents to make choices. The authors state that although over 180 fetal disorders can be detected, only 5 percent are serious enough to warrant consideration of abortion. They worry, however, that although the advice given by genetic counselors is supposed to be nondirective in relation to abortion, the outcomes in different services may vary greatly. Moreover, results of amniocentesis are sometimes used in questionable ways by parents who insist on a "perfect" baby or the sex of their choice.

The authors also see dangers in relation to confidentiality and the use of test information by insurance companies and health care providers. Children with genetic diseases often require years of expensive health care; genetic disorders occur in 3 to 5 percent of live births but account for 20 to 30 percent of pediatric hospital admissions. Thus health care providers have economic reasons for favoring abortion following negative test results. Some HMOs refuse coverage for certain genetic disorders, including spina bifida and autism. These may, for example, refuse coverage to children with cystic fibrosis when the diagnosis was made during pregnancy and the parents decided against an abortion. The authors also discuss "wrongful life" and "wrongful birth" litigation where testing was not done and babies were born with Tay-Sachs disease or cystic fibrosis. Such failure to use existing diagnostic technology may be deemed malpractice by the courts. "The availability of diagnostic tests implies the obligation to use them" (p. 57).

Most of the conditions discussed above are the result of single gene disorders, inevitable in the presence of the gene. Restriction fragment length polymorphisms (RFLPs), the result of cleaving DNA with particular restriction enzymes, are used to make probes to locate the chromosome and the region on that chromosome of a particular defective gene. This usually involves taking DNA from a family in which a number of members have the genetic disease and comparing DNA markers of affected family members with healthy ones. Such markers have also been found for genes that may "predispose individuals to some forms of cancer, emphesema, juvenile diabetes, Alzheimer's disease, cleft palate, heart disease and mental illness" (p. 28), disorders for which the etiology is much more complex, as they include an important environmental component

Diagnostic tests for mental illness are even more problematic. The authors quote the NIMH "Report to Congress on the Decade of the Brain" (1988), which predicts that "presymptomatic detection of psychiatric disease vill be routine." Subjects at risk for schizophrenia or depression may be identified before clinical symptoms appear. Here we have not only the problem of what use employers and insurance companies might make of these predictions, but how accurate they may be. A study published in 1983 of an Old Order Amish family located two markers on chromosome 11 that had the same pattern of inheritance in manic-depressive members of that family. It was assumed that the markers indicate the presence of a gene responsible for manic-depressive illness on that chromosome. The authors reported that only 60 to 70 percent of those with the markers actually became mentally ill. Moreover, some people in this family's pedigree became manic-depressive but lacked the markers. The presence of such a marker for such an illness should clearly not be defined as the disease in the absence of clinical manifestations. Since the publication of Dangerous Diagnostics the location of the gene has been retracted (Nature, 16 November 1989). This scenario does not invalidate the methods employed but points out the extreme caution needed in using genetic data to diagnose, much less predict, complex psychiatric diseases.

The use of new brain imaging techniques in the courts in lieu of or in addition to the opinions of psychiatrists is increasing. The Insanity Defense Act of 1984 refused to allow as evidence the opinions of psychiatrists on the legal issues of cases, permitting only testimony on the defendent's "medical" mental condition. Since that time more sophisticated evidence has been used in the courts. Evidence from PET scans of decreased frontal lobe activity was introduced in a 1985 California murder case. In another case PET evidence of brain abnormalities was allowed in a legal malpractice suit brought by a man who had been clubbed on the head by a policeman. juries are said to be influenced by "hard" biological data rather than the "soft" psychiatric evidence, although the jury turned down the insanity plea in the California case above.

Other diagnostic tests resulting from new biotechnology are also used increasingly in the courts, particularly DNA fingerprinting in rape cases. DNA fingerprinting (from blood, semen, and hair roots) permits conclusive identification of all but identical twins. The authors state that "the highly compelling nature of such scientific evidence, however, holds some danger that the DNA test could undermine the presumption of innocence in a jury trial." This might have been true prior to the introduction of DNA fingerprinting, when the tests used were statistical, i.e., had less than complete accuracy, but I find this hard to argue today. DNA fingerprinting can after all be used to defend the innocent rape suspect as well as to convict the guilty. In any case DNA fingerprinting has met the Frye "novel science" test and has been in use in many states since 1987. Both the FBI and commercial firms are doing DNA fingerprinting; the FBI is establishing files of this new type of fingerprint. More questionably, immigration authorities in the U.S. and Britain are also requesting DNA fingerprints, a possible source of abuse of this diagnostic technology.

The negative aspects of biological testing and the potential for social control these tests signal to the authors are perhaps best brought out in their discussion of the workplace and the schools. A good case is made that biological tests are being used in the workplace not just to inform workers of their status, but to take action on the basis of this screening. The economic policies of companies in several cases at least attempt to eliminate workers at risk rather than to change the risks of the working environment. In a well-publicized American Cyanamid case from 1978 female employees between sixteen and fifty were barred from many jobs unless they were sterilized. A representative of the company was quoted as saying, "The ideal is that the workplace has to be safe for everyone .... In the real world that's totally unachievable without emasculating the chemical industry." Subsequently OSHA has found only three substances that are potential hazards to reproductive health and OTA has found no basis for assuming that a fetus is more susceptible to harm from most chemicals than an adult. In 1988 the Equal Employment Opportunity Commission (EEOC) ruled that companies may not fire or refuse to hire women because of alleged damage to the fetus by exposure to chemicals unless there is scientific evidence." Autoworkers v. Johnson Controls, involving the exposure of women of reproductive age to lead, is currently before the Supreme Court.

In other cases genetic screening has been used to screen out workers who have a detectable genetic abnormality that has not been shown to be a hazard in the workplace. It is not difficult to test workers for sickle cell trait (the heterozygous condition Hbs HbA for abnormal hemoglobin). Here again the problem is not with the test itself, one may wish to know whether one is a carrier in terms of reproductive decisions. These carriers are asymptomatic and are not subject to health hazards, except perhaps involving exertion at high altitudes (and low oxygen levels). There is no evidence that they are at higher risk than other workers from chemical hazards, yet they have been screened by employers and excluded from jobs requiring contact with chemicals. Since nearly 10 percent of American blacks are carriers, the issue becomes one of racial discrimination as well. Four states have legally banned genetic testing by employers after controversy about sickle cell tests.

Testing is ubiquitous in schools. In contrast to the 1960s, when socioeconomic conditions, family problems, and other environmental factors were thought to explain inappropriate behavior and poor educational performance, these problems are now thought to lie less in the environment and more in the student's own brain. So-called hyperactive children and others with learning difficulties are now assumed to have biological deficits." The National Joint Committee on Learning Disabilities declared in 1981 that learning disabilities were "intrinsic to the individual" and presumed them to be organic. Thus, biological diagnostics are called on. Although schools do not yet generally have or use CEEGs, BEAM, PET or the new SQUIDs (Superconducting Quantum Interference Devices), all of these may be used to detect differences in brain activity between "normal" children and dyslexic children-those having reading difficulties not associated with poor eyesight. Even without such testing, children formerly termed hyperactive and now classified by the American Psychiatric Association as having "attention deficit disorder" may be prescribed drugs, particularly Ritalin (methylphenidate). In some school districts disruptive children may be required to take these drugs as a condition of attending public schools, as was true for Casey Jessop in a 1985 New Hampshire case. As attention deficit disorder is now believed to affect up to 10 percent of the 45 million children in school the increased use of these drugs is a dismaying prospect. The U.S. Drug Enforcement Administration doubled its production ceiling of Ritalin in 1987 in response to increased use. It is clear that schools are under increasing social pressure to improve literacy, discipline, and accountability in general. They arc also under pressure to mainstream as many children as possible. It is not at all clear that increased biological testing and emphasis on biology to the exclusion of other causes of educational problems can resolve these problems even if every school system has its own SQUID.

This is an important book, detailing the new diagnostics and showing in what ways they are presently or potentially dangerous. The negative aspects are perhaps overemphasized, but the authors themselves point out many positive uses of these technologies. There is little discussion of ways to prevent misuse of the new diagnostics-only a very few pages at the end of the book. This important subject deserves more attention and is indeed receiving it elsewhere. For example, two separate conferences were held in Boston in 1989 and 1990 concerning the uses and misuse of genetic testing technologies. These conferences included both physicians and directors of genetic testing laboratories, some of which have their own ethics committees. The Society for Human Genetics is also working on guidelines for these issues. In addition, ethical issues have been considered in some depth before the undertaking of two mass screening projects, a cystic fibrosis screening of newborns to determine whether early therapeutic intervention is of any value in the treatment of CF, and the California voluntary mass prenatal alpha fetoprotein screening for neural tube defects.

Biological diagnostics are not in themselves dangerous. Where therapy exists or can be developed they can be life saving. Even when there is no therapy, they enable individuals to use the information to make important life choices. But because diagnostics wield great power for good or for ill, we must provide legal and other safeguards against their misuse.
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Author:Slack, Nancy G.
Publication:The Hastings Center Report
Article Type:Book Review
Date:Jan 1, 1991
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