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Theor Med Bioeth. 2003;24(1):31-58.

Gene therapy: ethical issues.

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Biological and Health Sciences, Empire State College, State University of New York, NY 10014-4382, USA.


To discern the ethical issues involved in current gene therapy research, to explore the problems inherent in possible future gene therapies, and to encourage debate within the scientific community about ethical questions relevant to both, we surveyed American Society of Human Genetics scientists who engage in human genetics research. This study of the opinions of U.S. scientific experts about the ethical issues discussed in the literature on gene therapy contributes systematic data on the attitudes of those working in the field as well as elaborative comments. Our survey finds that respondents are highly supportive of the potential use of somatic cell gene therapy to cure serious diseases in adults and children as well as prospective offspring. A clear majority, however, believe that using such genetic techniques for enhancement purposes is unacceptable. Delineating the line between disease/disorder and improvement/enhancement poses a problem not easily resolved and one conducive to the growth of slippery-slope apprehensions. The majority of respondents also advocate germ-line therapy, in theory at least, and under similar restrictions, but they recognize the roadblock that the existence of unanticipated negative consequences currently presents. Another complex matter involves trying to determine appropriate reasons for choosing target diseases for research, for which the dichotomy between rare single-gene and common multifactorial diseases reveals an ongoing dilemma.

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