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H T Greely

Publications and source records attributed to H T Greely.

At least 19 recordsLinked to original sources
PubMed2001

Human genome diversity: what about the other human genome project?

Although the Human Genome Project has been successful, the Human Genome Diversity Project, proposed in 1991, has so far failed to thrive. One of the main values in studying the human genome, however, will come from examining its variations and their effects. To do that in a systematic way, an active Human Genome Diversity Project, or something very similar, will ultimately prove vital. Such an effort will confront difficult ethical and political issues; this article reviews those issues and tries to show how they might be overcome.

Ethics↗
PubMed2001

Views of United States physicians and members of the American Medical Association House of Delegates on physician-assisted suicide.

OBJECTIVE: To ascertain the views of physicians and physician leaders toward the legalization of physician-assisted suicide. DESIGN: Confidential mail questionnaire. PARTICIPANTS: A nationwide random sample of physicians of all ages and specialties, and all members of the American Medical Association (AMA) House of Delegates as of April 1996. MEASUREMENTS: Demographic and practice characteristics and attitude toward legalization of physician-assisted suicide. MAIN RESULTS: Usable questionnaires were returned by 658 of 930 eligible physicians in the nationwide random sample (71%) and 315 of 390 eligible physicians in the House of Delegates (81%). In the nationwide random sample, 44.5% favored legalization (16.4% definitely and 28.1% probably), 33.9% opposed legalization (20.4% definitely and 13.5% probably), and 22% were unsure. Opposition to legalization was strongly associated with self-defined politically conservative beliefs, religious affiliation, and the importance of religion to the respondent (P <.001). Among members of the AMA House of Delegates, 23.5% favored legalization (7.3% definitely and 16.2% probably), 61.6% opposed legalization (43.5% definitely and 18.1% probably), and 15% were unsure; their views differed significantly from those of the nationwide random sample (P <.001). Given the choice, a majority of both groups would prefer no law at all, with physician-assisted suicide being neither legal nor illegal. CONCLUSIONS: Members of the AMA House of Delegates strongly oppose physician-assisted suicide, but rank-and-file physicians show no consensus either for or against its legalization. Although the debate is sometimes adversarial, most physicians in the United States are uncertain or endorse moderate views on assisted suicide.

Adult↗
PubMed2001

Informed consent and other ethical issues in human population genetics.

Human population genetics has entered a new era of public interest, of controversy, and of ethical problems. Population genetics raises novel ethical problems because both the individuals and the populations being studied are, in effect, "subjects" of the research. Those populations are collectively subject to possible benefits and harms from the research and have interests, somewhat different from those of the individuals, that must be considered from both ethical and practical standpoints. The chapter first describes the new setting for research in human population genetics. It then examines the most controversial ethical issue in population genetics-whether researchers must obtain the informed consent of both the individual subjects and the group as a collectivity. Other vexing issues, including special problems caused by researchers' commercial interests, confidentiality, control over research uses and materials, and return of information to the population are also considered.

Ethics, Medical↗
PubMed2000

Iceland's plan for genomics research: facts and implications.

The government of Iceland has authorized a private, for-profit firm, deCODE Genetics, to construct a database of the population's medical records as part of a larger plan by deCODE for human genetics research. This article presents the background for genetics research in Iceland, the history of deCODE, and the terms of the law authorizing the database. It then examines five objections to the law, based on commercialization, lack of informed consent, risks to privacy, the effects of other research, and financial unfairness. It concludes that the Icelandic model is not a good precedent for similar research elsewhere.

Confidentiality↗
PubMed1999

Special issues in genetic testing for Alzheimer disease.

Genetic testing for Alzheimer disease (AD) raises two issues that are, thus far, unusual. First, genetic testing of dementia patients for diagnostic purposes necessarily leads to information of some predictive significance for the patient's family members. What information about the test results should be disclosed to whom needs careful consideration. Testing for a patient's apolipoprotein E (APOE) allele status was used, both in research and clinically, as a predictor of cardiovascular risk long before it was known to be associated with AD risk. Whether and how information about the newly understood AD implications of the test should be provided to those who were tested for cardiovascular risk needs attention, as does the general problem of new, and possibly less benign, meanings for old genetic test results.

Alzheimer Disease↗
PubMed1999

Genetic testing and Alzheimer disease: recommendations of the Stanford Program in Genomics, Ethics, and Society.

Several genes associated with Alzheimer disease (AD) have been localized and cloned; two genetic tests are already commercially available, and new tests are being developed. Genetic testing for AD--either for disease prediction or for diagnosis--raises critical ethical concerns. The multidisciplinary Alzheimer Disease Working Group of the Stanford Program in Genomics, Ethics, and Society (PGES) presents comprehensive recommendations on genetic testing for AD. The Group concludes that under current conditions, genetic testing for AD prediction or diagnosis is only rarely appropriate. Criteria for judging the readiness of a test for introduction into routine clinical practice typically rely heavily on evaluation of technical efficacy. PGES recommends a broader and more comprehensive approach, considering: 1) the unique social and historical meanings of AD; 2) the availability of procedures to promote good surrogate decision making for incompetent patients and to safeguard confidentiality; 3) access to sophisticated genetic counselors able to communicate complex risk information and effectively convey the social costs and psychological burdens of testing, such as unintentional disclosure of predictive genetic information to family members; 4) protection from inappropriate advertising and marketing of genetic tests; and 5) recognition of the need for public education about the meaning and usefulness of predictive and diagnostic tests for AD. In this special issue of Genetic Testing, the PGES recommendations are published along with comprehensive background papers authored by Working Group members.

Alzheimer Disease↗
PubMed1999

Breaking the stalemate: a prospective regulatory framework for unforseen research uses of human tissue samples and health information.

The legal and ethical issues raised by new research uses of previously collected human tissues and health information are increasingly important to genetics research. This Article discusses and criticizes current positions on such uses, including the recent report of the National Bioethics Advisory Commission, Research Involving Human Biological Materials. It then proposes a new regulatory framework for tissue and information collected in the future that would better protect the interests of the people who provide them. It ends by suggesting a resolution for the problems of previously collected tissue and information.

Advisory Committees↗