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  3. Does Genetic Research Threaten Our Civil Liberties?

Does Genetic Research Threaten Our Civil Liberties?

游客2024-06-08  15
问题                          Does Genetic Research Threaten Our Civil Liberties?
    The Current Genetic Research
    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, perhaps 100,000 in all. Several months ago, the U.S. government and a private corporation announced that they had "completed" the "map" of the genome, although actually there are still many gaps. Much related 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 allow the rapid monitoring and matching of many millions of records. A 1994 benchmark study by the ACLU found that "concerns about personal privacy run deep among the American people".
    The promotion of an ideology of geneticization fosters the belief that genes are determinative of an individual’s behavior, character, and future. Capitalist economic relations have created a scramble (争夺) 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.
    The Technological Society
    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 (and not acts of God or of nature), they are themselves actually imbued with human 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 (分歧).
    The United States is a society in which the differential access to wealth and power has been exacerbated during recent years. Thus, 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, modem 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 the society.
    The results of technological advancement appear to offer a good future  capabilities of enhanced surveillance (监视) and control over people and events, as well as promises of perfectionism (thus leading to both a loss of privacy and increased opportunities for discrimination by powerful entities). Predictability will replace a tolerance for natural variation and diversity.
    Loss of Privacy
    Genetic privacy, like medical privacy in general, involves notions of the dignity and integrity of the individual. 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?
    •Infant blood tests are stored in database. The U.S. 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 barfing all third party use, and the Department will not accept waivers (弃权声明) from the next of kin (最近的亲属) 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; indeed, Federal legislation penalizes states fiscally if they don’t participate, and now all do. Yet the data includes samples from those whose crimes have low recidivism (累犯) rates or don’t leave tissue samples; in some states people merely accused are forced into the program, and in others there are politicians calling for an expansion along these lines, despite the Constitutional presumption of innocence.
    •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" and 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 few years ago, and a panel of the U.S. National Research Council has warned that the computerized medical records of millions of citizens are open to misuse and abuse.
    Genetic Discrimination
    Genetic discrimination is the other major civil liberty threatened by genetic 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, it cannot tell us 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.
    The growth of the mania (狂热) for testing in the U.S. 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.
    Federal rules for medical privacy (including genetic information) were announced in August 2000, after weaker proposals by the Clinton Administration received a great deal of criticism. While providing standards for the disclosure of bio-information, the rules require that the patient only receive notice, not give consent; thus, there still would not be full patient control over sensitive information.
    The President has also 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. And he has issued an Executive Order barring genetic discrimination in Federal employment.
    Conclusion
    Beyond the risks of discrimination and loss of privacy, 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, thus contributing to the image of people with "defective" genes as "damaged goods". This, in effect, encourages a "blame the victim" mindset, directly contrary to the public policy embodied in the Americans with Disabilities Act, now 10 years old. Economic and social resources end up being diverted into finding biomedical "solutions" while social measures get badly needed.
    Although new technologies claim to offer us more "freedom", they really can threaten our civic values. This is certainly true of the new biology. [br] Genetic privacy is as real a concern as ______ for the dignity and integrity of the individual.
选项
答案 medical privacy
解析 根据关键词genetic privacy查读小标题Loss of Privacy下面第一段第一句 Genetic privacy，like medical privacy in general，involves notions of the dignity and integrity of the individual．
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