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Germ-Line Gene Therapy and the Clinical Ethos of Medical Genetics

December 20, 2016

Although the ability to perform gene therapy in human germ-line cells is still hypothetical, the rate of progress in molecular and cell biology suggests that it will only be a matter of time before reliable clinical techniques will be within reach. Three sets of arguments are commonly advanced against developing those techniques, respectively pointing to … Read more

The NIH “Points to Consider” and the Limits of Human Gene Therapy

December 20, 2016

In this essay, I examine the sources and reach of the NIH “Points to Consider.” These guidelines are based on normative considerations inherited from two sets of science policy deliberations that took place in the United States during the 1970s: the discussion of research with human subjects and the recombinant DNA debate. The combined lessons … Read more

Cosmetic Surgery for a Fatally Ill Infant

December 20, 2016

The ethical and clinical dimensions of strabismus surgery in a case of an infant with mucolipidosis type II are discussed. Three sets of considerations are relevant to the decision of performing such surgery: professional obligations to protect patients from futile or contraindicated treatment; parental authority to assess the risks and benefits for elective pediatric care; … Read more

The Human Genome Project and Bioethics

December 20, 2016

In lieu of an abstract, here is a brief excerpt of the content: The fifteen-year “human genome project” at the National Institutes of Health and the Department of Energy officially began on October 1, 1990. With it began a new dimension in federally supported scientific research: concurrent funding for work to anticipate the social consequences … Read more

Priorities in Professional Ethics and Social Policy for Human Genetics

December 20, 2016

According to a recent Congressional Office of Technology Assessment survey,1 genetic testing by employers for the purposes of excluding individuals from particular jobs remains rare. This should not be surprising. As the current report2 of the Council on Ethical and Judicial Affairs of the American Medical Association points out, the potential of such tests as … Read more

Germ-Line Gene Therapy

December 20, 2016

‘Human germ-line engineering’ is an aboriginal subject in bioethics. It was there in the beginning. It remains primitive. It inspires anxiety among pioneers. But it has much to teach us, if we will go out and meet it. The subject of human genetic engineering, along with organ transplantation, psychosurgery and mechanical ventilation, served to establish … Read more

Recommendations on Predictive Testing for Germ Line P53 Mutations Among Cancer-Prone Individuals

December 20, 2016

Almost every form of cancer in humans has been reported to aggregate in families. These familial clusters can be due to inheritance of a mutated cancer-susceptibility gene, though other explanations include chance association and shared exposures to environmental carcinogens. In recent years, the chromosomal locations of some cancer-predisposing genes have been mapped by the new … Read more

Human Genome Research and the Public Interest

December 20, 2016

This essay reviews the efforts of the U.S. Human Genome Project to anticipate and address the ethical, legal, and social implications of new advances in human genetics. Since 1990, approximately $10 million has been awarded by the National Institutes of Health and the Department of Energy, in support of 65 research, education, and public discussion … Read more