Law in tension with evolving ethical perception: prenatal genetic testing for sex and disability

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Burgess, Michael M. ; Williams-Jones, Bryn ; Cardiff University (2004)
  • Publisher: Cardiff University
  • Subject: H1

Legal prohibitions are often simple responses to highly complex ethical and social problems. Recommendations for legal prohibition of prenatal sex-selection distinguish between testing for sex and for disabling conditions. This distinction appears to be based on an objective difference between gender and disease or conditions that are themselves causes of suffering. But ethical analysis reveals symmetry between these two cases, challenging whether the law is responding to differences in the nature of the test, or to social pressures against discrimination that are better developed with respect to sexism than is the case for disability discrimination. This paper argues that the strongest position against sex-selection is based on a rejection of the parental assessment that a person’s sex seriously compromises quality of life together with the dedication of social resources to minimize discrimination based on sex. Some genetic conditions produce disabilities that cannot be alleviated through improved social circumstances; the reasons for not restricting prenatal testing and termination as an option for parents for these conditions are distinguishable from those supporting prohibition of sex-selection. However, the severity and lack of predictability of disability associated with other genetic conditions are strongly contingent on social circumstances. Thus it may be reasonable to acknowledge that serious social reforms are required while at the same time supporting parental assessment of quality of life through testing and termination. But problems to do with the aggregate effects of individual parental choices, together with the need to work toward more supportive social circumstances, emphasize the importance of involving persons with disabilities and their spokespersons in evaluating social circumstances, disability discrimination, appropriate prenatal testing and related information to support parental decisions.
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