‘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

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

Authors participating in the renewed discussion of germ-line gene therapy have begun conflating two senses of the term “prevention,” which I distinguish as “phenotypic prevention” and “genotypic prevention.” Phenotypic prevention describes medical efforts to forestall the clinical manifestation of a genetic disease in an at-risk patient, like newborn screening and dietary prophylaxis for phenylketonuria. Genotypic … Read more

The first wave of practical products from the international effort to produce systematic maps of the human genome and improve DNA sequencing technologies is taking the form of new tools to predict the risk of specific diseases in individual patients. DNA-based tests for molecular mutations associated with clinical syndromes increasingly allow clinicians to detect disease … Read more

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

Officials at the Human Genome Initiative, acutely aware of the threat of genetic discrimination, are seeking legal weapons that citizens can use to protect themselves, report Elinor J. Langfelder and Eric T. Juengst of the project’s Ethical, Legal, and Social Implications Branch. Under today’s laws, [open quotes]there is little to discourage employers from using genetic … Read more

Somewhere near the end of a consent form, script, recruitment letter, or brochure, researchers usually state that they will keep information “confidential.” But how is this promise evaluated by the Institutional Review Board (IRB) and kept by the researchers? Given the researchers’ confidentiality plan, the IRB must assess the risks related to participation, including risks … Read more