Genetic Testing and its Implications: Human Genetics Researchers Grapple with Ethical Issues

Science, Technology and Human Values 28 (3):365-402 (2003)
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Abstract

To better understand ethical issues involved in the field of human genetics and promote debate within the scientific community, the author surveyed scientists who engage in human genetics research about the pros, cons, and ethical implications of genetic testing. This study contributes systematic data on attitudes of scientific experts. The survey finds respondents are highly supportive of voluntary testing and the right to know one's genetic heritage. The majority consider in utero testing and consequent pregnancy termination acceptable for cases involving likelihood of serious disease but disapprove for genetic reasons they consider arbitrary, leaving a gray area of distinguishing between treatment of disorders and enhancement still to be resolved. While safeguarding patient confidentiality versus protecting at-risk third parties presents a dilemma, preserving privacy from misuse by institutional third parties garners strong consensus for legislation against discrimination. Finally, a call is made for greater genetic literacy.

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