Charles Weijer, Dalhousie University, Halifax, Canada
Published online: July 2006
DOI: 10.1038/npg.els.0005179
Protections for research subjects are traditionally limited to those for individual participants. As communities are increasingly targeted for genetic research, new protections, including in some cases seeking informed consent from those communities, must be developed.
Keywords: genetic research; ethics; informed consent; participatory action; community
| References | |
| book Australian National Health and Medical Research Council (1991) Guidelines on Ethical Matters in Aboriginal and Torres Strait Islander Research. National Health and Medical Research Council, Publication no. E13. | |
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| Further Reading | |
| book Council for International Organizations of Medical Sciences (2002) CIOMS International Ethical Guidelines for Biomedical Research Involving Human Subjects, revised draft. [http://www.cioms.ch]. | |
| Davis DS (2000) Groups, communities, and contested identities in genetic research. Hastings Center Report 30(6): 38–45. | |
| book Dresser R (2001) When Science Offers Salvation: Patient Advocacy and Research Ethics. New York, NY: Oxford University Press. | |
| Freeman WL (1994) Making research consent forms informative and understandable: the experience of the Indian Health Service. Cambridge Quarterly of Healthcare Ethics 3: 510–521. | |
| book King NP, Henderson GE and Stein J (1999) Beyond Regulations: Ethics in Human Subjects Research, pp. 189–212. Chapel Hill, NC: University of North Carolina Press. | |
| Macaulay AC, Commanda LE, Freeman WL, et al. (1999) Participatory research maximises community and lay involvement. North American Primary Care Research Group. British Medical Journal 319: 774–778. | |
| Macaulay AC, Gibson N, Freeman WL, et al. (2001) The community's voice in research. Canadian Medical Association Journal 164: 1661–1663. | |
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