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Quality of Life and Human Difference: Genetic Testing, Health Care, and Disability

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Genetic technology has enabled us to test fetuses for an increasing number of diseases and impairments. On the basis of this genetic information, prospective parents can predict – and prevent – the birth of children likely to have those conditions. In developed countries, prenatal genetic testing has now become a routine part of medical care during pregnancy. Underlying and driving the spread of this testing are controversial assumptions about health, impairment, and quality of life. While the early development of prenatal testing and selective abortion may have been informed by the questionable view that they were just another form of disease and disability prevention, these practices are now justified largely in other terms: prospective parents should be permitted to make reproductive decisions based on concern for the expected quality of their children’s lives. These practices, and their prevailing rationale, reinforce a trend in biomedical ethics that began in the 1970s, one giving a central role to quality of life in health care decision making.

The role of quality assessments in social policy, especially health policy, and ethical and social issues raised by prenatal testing for disability are discussed in this analysis. A theme of the literature has been the role played by controversial assumptions about the quality of life of people with disabilities. This book turns the perspectives of disability scholars to issues that have largely been the province of health methodology, policy and philosophy, while re-directing philosophical policy analysis to problems that have largely been the province of disability scholarship.

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