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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...

Human Genome Research and the Responsible Use of New Genetic Knowledge

December 20, 2016

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...

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...

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...

“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...

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...

Assessing the Social Impact of Human Genome Research

December 20, 2016

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...

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...