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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

The Ethics of Prediction

December 20, 2016

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

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

Social Policy Issues in Genome Research

December 20, 2016

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

“Prevention” and the Goals of Genetic Medicine

December 20, 2016

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