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AFTER DECADES of perfecting ways to locate genes on the chromosomes, determine their functions, and screen for their deleterious or beneficial effects, the nation's biomedical elite want to ensure that they really know how to use these elegant techniques.
Many of the questions they grapple with have little to do with whether a five-gene therapy protocol will yield optimum treatment for patients with cystic fibrosis or if the study of gene sequences in yeast, worms, and flies eventually will fill in all the knowledge gaps about our own.
Pure science is producing many of those answers. Less clear-cut are the implications of informed consent if newborn multiplex testing—which can detect hundreds of genetic diseases—becomes widespread. Or the ethical impact and emotional toll of screening for diseases for which there is no effective cure. Experts say few physicians have the know-how to begin screening and counseling for genetic illnesses, and the
Voelker R. The Genetic Revolution: Despite Perfection of Elegant Techniques, Ethical Answers Still Elusive. JAMA. 1993;270(19):2273-2277. doi:10.1001/jama.1993.03510190023005