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Gene Therapy, Genetic Testing, and Uses of Genetic Information

Elucidation of the structure and function of the genes associated with inherited traits and diseases has been progressing at an unprecedented pace that likely will increase as the Human Genome Project progresses. Enhanced diagnostic capabilities in the prenatal and neonatal periods and later in life will foster great advances in preventive medicine, treatment, and genetic counseling. However, many are concerned that this revolution in diagnostic capability raises possibilities for eugenics, unprecedented invasions of privacy, interference with personal liberties, and, at the very least, difficult moral and personal choices.

Many of the concerns generated by the new genetic technologies focus on the potential for abusive or ill-considered applications. Thus, discussion of genetic technologies and information can be used as a vehicle for dealing with the broader issue of the social responsibility of scientists. History provides other examples in which society has had to weigh its desire for new knowledge and technologies against an array of positive and negative repercussions for the public. Fifty years ago, such an emerging technology was nuclear fission. The future undoubtedly will present similar dilemmas posed by an as yet unexploited area of science. Thus, in selecting research problems and procedures, scientists must be mindful of the potentially profound societal consequences of their activities.

In the realm of genetics, one area of controversy involves "gene therapies," in which disease-causing, defective gene sequences are "repaired" through recombinant DNA techniques. Although only in its infancy, gene therapy, and the associated ability to alter our genetic constitution, has raised a number of concerns related to the safety and ethics of the technique. A salient issue concerns the specter of eugenics -- or the possibility that the technique may be abused to produce humans that meet a limited group's ideal of a various physical and mental traits. This issue is raised in case J1.

Our diagnostic ability often exceeds our treatment capacity. Additional ethical considerations are raised by the prospect of being able to inform individuals of the probability of a future, possibly devastating illness without being able to offer any hope for cure or alleviation from suffering. This issue is dealt with in Case J2.

Finally, as information becomes available on an individual's genetic predisposition to a given disease, or inherited vulnerability to certain environmental hazards, appropriate uses of that information become a growing concern. Employment decisions made on the basis of presumed genetic tendencies have already led to legal action involving discrimination in employment practices. Many observers also question whether the prenatal knowledge that a baby will have certain traits or characteristics will lead to a tendency to abort fetuses that do not fit the parents' idea of an "acceptable" child.

Case J3 raises the specter of the type of assay that may someday be available thanks to the technology coming from genetics research. The researcher who has developed the test finds it attractive on both medical and financial grounds, but has misgivings nonetheless. The questions in the case hint at many of the problems discussed above and ask the reader to balance the benefits of knowledge against the potential for abuses of that knowledge.

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