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Synthesis/Regeneration 20   (Fall, 1999)

Don't Take Liberties with Our Genes

by Phil Bereano, University of Washington

"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 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 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.

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 perfection. 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). For example:

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. A panel of the US National Research Council warned in March 1998 that the computerized medical records of millions of citizens are open to misuse and abuse.

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.

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 individuals 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. 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.)

If cancer is cast primarily as a genetic disease, then legislators may discard efforts to clean up environmental carcinogens.

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 cannot tell us if a genetic mutation will become manifest; if it does 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 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 15 states have enacted some type of protection.

President Clinton announced his support of a federal bill which would prohibit health insurance providers from using any type 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.

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