DON’T TAKE LIBERTIES WITH OUR GENES
 

By Philip Bereano, JD


"The Human Gene Project at the National Institutes of Health, also being supported in universities all across America, will one day in the not-too-distant future enable every set of parents that has a little baby to get a map of the genetic structure of their child. So if their child has a predisposition to a certain kind of illness or a certain kind of problem, or even to heart disease or stroke in the early 40’s, they will be able to plan that child’s life, that child’s upbringing, to minimize the possibility of the child developing that illness or that predisposition, to organize the diet plan, the exercise plan, the medical treatment that would enable untold numbers of people to have far more full lives than would have been the case before. . . ."

Bill Clinton’s picture of a wonderful technofuture sounds like a threatening Brave New World to many Americans. The confluence of a number of technical and social trends has greatly enhanced the capacity for genetic surveillance and tracking:

• The science of genetics is a flourishing new industry, nourished in large part by the federally funded Human Genome Project. The goal of this ambitious research endeavor is to identify every gene found in the human body, approximately 100,000 in all. Much of the research focuses on genetic diagnostics: tests designed to identify genes thought to be associated with various medical conditions. More than 50 new genetic tests have been identified in the past five years alone.

• The increasing speed, sophistication, affordability, and interconnectivity of computer systems allows the rapid monitoring and matching of many millions of records.

• The promotion of an ideology of geneticization fosters the belief that genes are determinative of an individual’s behavior, character, and future. In the words of Nobelist Jim Watson, "We used to believe our destiny was in the stars; now we know it is in our genes." (The critical role of environment, and the complex interplay between a genome and its surroundings, is largely ignored in the media and public discourse about genetics.)

• Capitalist economic relations have created a mad scramble for venture capital, the altering of patent laws, and calls for mass genetic testing by researchers who trade on the old image of the altruistic scientist to mask their conflicts of interest in testing labs, patents, consulting contracts, etc.

Technologies are not value-neutral; they usually embody the perspectives, purposes, and political objectives of powerful social groups. The dominant ideology in Western society proclaims that science and technology are value-neutral, and the only problems caused by technologies are either "externalities" (unintended side effects) or abuses. However, because technologies are the result of human interventions into the otherwise natural progression of activities, they are themselves actually imbued with intentions and purposes. Current technologies do not equally benefit all segments of society (and indeed are not intended to do so), although to maximize public support for these developments and to minimize potential opposition, their proponents rarely acknowledge these distributional ramifications.

The United States is a society in which the differential access to wealth and power has been exacerbated during recent years. Because technologies are intentional interventions into the environment, those people with more power can determine the kinds of technological developments that are researched and implemented. Because of their size, scale, and requirements for capital investments and for knowledge, modern technologies are powerful interventions into the natural order. They tend to be the mechanisms by which already powerful groups extend, manifest, and further consolidate their powers. Thus, technologies themselves are not neutral; they are social and political phenomena. Genetic technologies and computerization exhibit these characteristics, and reflect power differentials in our society.

The resulting milieu of technological triumphalism appears to offer omniscience--capabilities of enhanced surveillance and control over people and events, as well as promises of perfectionism. Predictability will replace a tolerance for natural variation and diversity. Leading scientists have already called for programs of eugenics, labelled as "genetic enhancement" to create a less distasteful package.

The growth of the mania for testing in the US is a manifestation of class relationships, through new technological possibilities: employers test employees, insurance companies and health organizations test patients, college officials test students, legislators pass bills to test a variety of disempowered groups (welfare recipients, prisoners, immigrants and the like). Such indignities are never foisted upon the ruling class by the masses. For example:

• A pregnant woman whose fetus tested positive for cystic fibrosis was told by her health maintenance organization (HMO) that it would be willing to cover the cost of an abortion but would not cover the infant under the family’s medical policy if she elected to carry the pregnancy to term.

• A healthy woman who casually mentioned to her family doctor that her father had been diagnosed with Huntington’s disease, and that she herself was at risk for inheriting this genetic disorder, was later denied disability insurance. The insurance company rejected her because they found a note about her father’s diagnosis written in the margin of her medical records.

• A healthy boy who carried a gene predisposing him to a heart disorder was denied health coverage by his parents’ insurance company, even though the boy took medication that eliminated his risk of heart disease.

• The US Department of Defense insists on taking DNA samples from all its personnel, ostensibly for identification of those killed in action and body parts from military accidents--despite the fact that the samples are to be kept for 50 years (long after people have left active duty), the program includes civilian employees, the agency refuses to issue regulations barring all third party use, and the Department will not accept waivers from the next of kin of subjects not wanting to donate tissues.

• The FBI has been promoting the genetic screening of criminals to establish state DNA identification data banks to be used in criminal investigations; recent Federal legislation penalizes states fiscally if they don’t participate. Yet the data includes samples from those whose crimes have low recidivism rates or don’t leave tissue samples; in some states people merely accused are forced into the program.

• Infant blood samples, from the heel-sticks used to determine blood type and test for PKU, are stored as "Guthrie blots;" California alone has more than seven million in its repository.

The American Civil Liberties Union advocates that "the decision to undergo genetic screening is purely personal;" it should not be "subject to control or compulsion by third parties" or the government. And "where a person has intentionally undergone genetic screening procedures there must be no disclosure of findings to third parties without the express and informed consent of the subject given after the results of the screening are made known to the subject and upon such times and conditions as the subject may require . . . ."

Yet patients’ records "are commodities for sale," in the words of the New York Times and a panel of the US National Research Council warned that the computerized medical records of millions of citizens are open to misuse and abuse.

A 1994 benchmark study by the ACLU found that "concerns about personal privacy run deep among the American people." Genetic privacy, like medical privacy in general, involves notions of the dignity and integrity of the individual. In addition to some of the aspects already noted (is data accurate; can the individual access their own files; can the donor correct inaccurate data; are the custodians faithful and are technical security systems protecting the data where possible; does the individual have control over which third parties are allowed access, and under what conditions?), the key problem concerns the "front end" collection of the data itself.

Data should only be collected voluntarily, using modern notions of informed consent. Mandatory testing, testing coerced by the conditioning of benefits or employment, surreptitious testing--all violate privacy notions. The scope of the informed consent should define future allowable uses of the samples. In particular, there should not be any general exemption for future unconsented research uses--one’s integrity is not any less compromised because a third party is wearing a lab coat. (If the argument is made that this may compromise the ability to do research, we should remember that upholding civil liberties values often leads to inefficiencies; we certainly could catch more crooks if we did away with the Fourth Amendment prohibition on warrantless searches.)

Genetic discrimination is the other major civil liberty threatened by genetics research. Scientists working with the Council for Responsible Genetics have documented hundreds of cases where healthy people have been denied insurance or employment based on genetic "predictions." Of course, relatively few genetic diseases are deterministic; most tests (which have inherent limits themselves) cannot tell us if a genetic mutation will become manifest; if it does do so, when in life this will occur; and if it happens, how severe the condition will be. In addition, many genetic conditions can be controlled or treated by interventions and environmental changes; that is why governments mandate testing newborns for PKU.

Recent Federal legislation, the Kennedy-Kassebaum bill, limits genetic discrimination regarding certain insurance medical insurance policies, but does not apply to others, nor to life, disability, or automobile insurance or to employment -- all areas of documented discrimination. Slowly, state by state, the CRG, ACLU, and patients’ rights groups are trying to get legislation passed to reduce or eliminate genetic discrimination; about fifteen states have enacted some type of protections.

On Monday, President Clinton announced his support of a Federal bill which would prohibit health insurance providers from using any types of genetic information for making decisions about whether to cover a person or what premium to charge. This legislation would address some of the discrimination problems which have been occurring.

Beyond the risk of discrimination, however, society’s fascination with genetic determinism has other social and political consequences. An overemphasis on the role of genes in human health neglects environmental and social factors. For example, strong evidence points to links between environmental contamination and cancer. Current research priorities, however, are skewed toward identifying genetic predispositions to cancer. If cancer is cast primarily as a genetic disease, then legislators may discard efforts to clean up environmental carcinogens in favor of a search for "cancer genes."

In effect, we encourage a "blame the victim" mindset, where we condemn people with "faulty" genes. Social conditions such as poverty or environmental pollution, which correlate directly with poor health and higher mortality rates, become less important. And economic and social resources end up being diverted into finding biomedical "solutions" while societal measures get short-changed.

Although new technologies claim to offer us more "freedom," they really can threaten our civic values. This is certainly true of the new biology. As Jefferson warned, "the price of liberty is eternal vigilance"--it isn’t genetically hard-wired to happen automatically.

 

 

 

Philip Bereano, JD, is Professor of Engineering (technology and public policy) at the University of Washington, and a Board Member of the Council for Responsible Genetics.

*A version of this essay originally ran in the Seattle Times, July 17, 1997; it has been reworked and republished several times since then.

 
 
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