The Political Implications Of Human Genetic Technology by Robert H. Blank

Author:Robert H. Blank [Blank, Robert H.]
Language: eng
Format: epub
Tags: Science, General
ISBN: 9780891589754
Google: s5zuAAAAMAAJ
Publisher: Avalon Publishing
Published: 1981-06-30T04:56:46+00:00

The Need for Public Education

Despite an increased interest in genetic technology by the press and concerned segments of the public, genetic disease continues to be an area of ignorance for a major portion of the public (Levin, 1976). In spite of new screening legislation and awareness of the rapid advances in genetic technology, most lawmakers, under the pressure of a heavy workload and more immediate matters, tend to be uninformed and only marginally concerned (Jasper, 1974: 149), It is difficult under such circumstances to convince lawmakers to provide public funds for education concerning genetic problems and programs. Even in states with energetic screening programs, money for educating the public constitutes only a minor fraction, if any, of the program cost (see Reilly, 1977). Instead, the funds go almost exclusively to the actual cost of administering the tests. As this is more visible and easily measured, the funds appear to be well spent.

As the advances in genetic technology continue to accelerate and the technical possibilities for human genetic intervention multiply, it is imperative that public education be made an integral part of any attempts to apply the technology. This need centers on two aspects of education. First, there must be more general information on what genetic disease entails and a clarification of misunderstood concepts such as inheritance, carrier status, and the chance nature of chromosomal abnormalities. The guilt associated with genetic disease must be dispelled, and people should be encouraged to discuss openly the ramifications of genetic disease for the affected person and the family as well as society. This is best accomplished through counseling and public education programs.

Education is essential in every effort to minimize the stigmatization raised by genetic intervention. No matter how elevated the objectives of a genetic program are, the program is likely to accentuate the notion of "abnormality," whether represented by a person diagnosed as a "carrier" or a fetus diagnosed as "defective." Sorenson (1974: 172) contends that the amount of prejudice expressed toward mentally and physically disabled persons is "generally more than that expressed toward various minority groups." Annas (1979: 20) terms the mentally retarded "an oppressed minority group." Gustafson (1974: 210) sees a real danger in establishing "genetic profiles" of individuals. When the stigma of genetic disease is directed toward groups already the target of social discrimination, the problem is even more severe. Education alone cannot eliminate the stigma and resulting social pressures attached to people with particular genetic disorders or to the parents of such persons, but it can help reduce the belief that genetic disease is the fault of the parents or that those affected are less human because of their misfortune in the "reproductive roulette."

Second, in addition to educating the public on genetic disease in general, specific education programs relating to screening, counseling, or other programs designed to reduce the incidence of genetic disease must be included in all legislation. The public, and especially certain high-risk groups, not only must be made aware of the services available, but also must be educated on the scope and limitations of each program.

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