ETHICAL & LEGAL ISSUES IN THE DIFFUSION OF GENETIC TESTS

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Tests for common as well as rare genetic disorders will proliferate as more of the human genome is mapped. In addition to predicting those at risk for future disease, genetic tests can detect those at risk of having affected offspring, and, by prenatal diagnosis, the affected offspring as well. Such identification permits couples the options of avoiding the conception or birth of affected offspring. By these means as well as by presymptomatic interventions, genetic tests can result in reducing the burden of disease. However, some people's religious and ethical beliefs and concern for personal autonomy will lead them to reject testing. The objective, and rapid diffusion of genetic tests without infringing on personal autonomy and without neglecting those with rare diseases. With an insufficient number of trained geneticists to provide tests, non- geneticist physicians--including obstetricians, pediatricians, internists, and psychiatrists--will be involved in genetic testing. In this project, the knowledge of, and attitudes toward, genetic testing of physicians and master's level genetic associates will be determined. The law has already been used to mandate genetic screening, thereby undermining individual autonomy. Courts have held physicians liable for not performing genetic tests, thereby exerting pressure on other physicians to provide tests. A retrospective analysis of malpractice cases involving genetic technologies and those involving other technologies will determine whether courts have used different factors in deciding genetic compared to non-genetic cases. Current legislators and judges will be surveyed on their attitudes toward the use of law to alter the rate of diffusion of genetic tests. Many genetic tests are performed in university laboratories and offer little financial reward. Mapping of the human genome has already stimulated commercial interest. The extent to which commercial support of scientists working in universities as well as in industry influences the sharing of research findings and interest for rare diseases will be determined.