Informed Consent and Other Ethical Issues in Human Population Genetics
- 1 December 2001
- journal article
- review article
- Published by Annual Reviews in Annual Review of Genetics
- Vol. 35 (1) , 785-800
- https://doi.org/10.1146/annurev.genet.35.102401.091453
Abstract
▪ Abstract 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.Keywords
This publication has 15 references indexed in Scilit:
- Human Genomics Research: New Challenges for Research EthicsPerspectives in Biology and Medicine, 2001
- Human Genome Diversity ProjectPublished by Wiley ,2000
- Involving Study Populations in the Review of Genetic ResearchJournal of Law, Medicine & Ethics, 2000
- The Role of Community Review in Evaluating the Risks of Human Genetic Variation ResearchAmerican Journal of Human Genetics, 1999
- A Model Agreement for Genetic Research in Socially Identifiable PopulationsAmerican Journal of Human Genetics, 1998
- Group Identity and Human Diversity: Keeping Biology Straight from CultureAmerican Journal of Human Genetics, 1998
- Rethinking Risks to Human Subjects in Genetic ResearchAmerican Journal of Human Genetics, 1998
- Groups as Gatekeepers to Genomic Research: Conceptually Confusing, Morally Hazardous, and Practically UselessKennedy Institute of Ethics Journal, 1998
- Call for a worldwide survey of human genetic diversity: A vanishing opportunity for the Human Genome ProjectGenomics, 1991
- SEROLOGICAL DIFFERENCES BETWEEN THE BLOOD OF DIFFERENT RACES.: THE RESULT OF RESEARCHES ON THE MACEDONIAN FRONTThe Lancet, 1919