BOX 2-4 Recommendations of the NIH Workshop on Reproductive Genetic Testing: Impact on Women

In November 1991, the NIH conference "Reproductive Genetic Technologies: Impact on Women" made recommendations for a research and policy agenda related to reproductive genetics services. A summary of those recommendations follows (NIH Workshop on Reproductive Genetic Testing, 1991, pp. 1-8):

  1. Reproductive genetic services should not be used to pursue "eugenic" goals, but should be aimed at increasing individual control over reproductive decisions. Therefore, new strategies need to be developed to evaluate the success of such services .... Reproductive genetic services must ultimately serve personal, not public interests in improving the overall reproductive options of women .... The ideals of self-determination in family matters and respect for individual differences that lie behind the client-centered view of reproductive genetic services are jeopardized whenever the primary goal of these services becomes the prevention of the birth of individuals with a disorder or a disability. Such a goal has the potential to constrain the choices available to women and to further stigmatize those individuals affected by a particular disorder or disability. To the extent that voluntary genetic services are evaluated even indirectly in "eugenic" terms, societal pressures have the potential to threaten the important interests and desires of individual women and their families.

  2. Reproductive genetic services should be meticulously voluntary.

  3. Reproductive genetic services should be value-sensitive.

  4. Standards of care for reproductive genetic services should emphasize genetics information, education and counseling rather than testing procedures alone.

  5. Social, legal and economic constraints on reproductive genetic services should be removed.

  6. Increasing attention focused on the development and utilization of reproductive genetic testing services may further stigmatize individuals affected by a particular disorder or disability: The values that some place on health and disabilities, what people may be told about disabilities and even the use of certain language to describe the benefits of reproductive genetic testing has the potential to place a value on the worth of individuals with disabilities in society. Increased sensitivity to these issues and improved communication between the biomedical and the disabilities communities is urgently needed in order for the true impact of these developing technologies to become known. Individuals with disabilities, whose lives may be significantly influenced by these technologies must be involved in the development and implementation of further research to be carried out in the future.

The primary options now available following the identification of an affected fetus are to terminate the pregnancy or to prepare for the birth of an affected child. Given the limited but real hazards of prenatal diagnostic procedures, many experts initially recommended using prenatal diagnosis only if all the options it could offer were actually going to be utilized (Littlefield, 1970). However, a broad consensus developed in the intervening years that requiring parental commitment

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