Abstract
One of the most difficult contemporary issues facing the bioethics of clinical research is balancing the maintaining of a universality of ethics standards with a sensitivity to cultural issues and differences. The concept of “vulnerability” for research subjects is especially apt for investigating the ethical and cultural issues surrounding the conduct of genetic research among new immigrants to the United States, using the Sudanese Nuer and Dinka tribes, recently settled in the Midwest, as an example. Issues of cultural vulnerability arise for some immigrants, related to relationship to the earth and to kinship issues, that threaten the narrative richness of a subject's life as well as the way she situates herself in the world.
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References
Abate, T. ``Report emphasizes biotech’s need for academic-corporate study; authors discuss how to continue research, avoid ethical lapses.'' San Francisco Chronicle, 11 June 2001
Buckholtz, A. “Tracing Your Health Roots: Plant a Health Family Tree Now, and It Could Bear Fruit for Generations.” The Washington Post. Tuesday, November 16, 2004, HE01
Code of Federal Regulations, Title 45, Public Welfare. Department of Health and Human Services, National Institutes of Health, Office for Protection from Research Risks, Part 46, Protection of Human Subjects. http://www.hhs.gov/ohrp/humansubjects/guidance/45cfr46.htm (accessed 11/18/04)
Council for International Organizations of Medical Sciences, (CIOMS). International Ethical Guidelines for Biomedical Research Involving Human Subjects, http://www.cioms.ch/frame_guidelines_nov_2002.htm (accessed 11/18/04)
E.E Evans-Prichard (1956) Kinship and Marriage Among the Nuer Clarendon Press Oxford
G. Gong G. Haynatzki (Feb 2003) ArticleTitle“Association between Bone Mineral Density and Candidate Genes in Different Ethnic Populations and its Implications” Calcified Tissue International 72 IssueID(2) 113–123
Harris, M. Culture, People, Nature. Harper Collins, 1993. http://www.qigonghealing.com/sacred_earth/what.html (accessed 11/18/04)
J. Lee Kissell (2004) “The Moral Self as Patient” Ruth R. Purtilo and Henk A.M.J. ten Have. (Eds) Ethical Foundations of Palliative Care for Alzheimer Disease Johns Hopkins University Press Baltimore
M Konrad (2003) ArticleTitle“From Secrets of Life to the Life of Secrets: Tracing Genetic Knowledge as Genealogical Ethics in Great Britain” Journal of the Royal Anthropological Institute 9 339–358
C. Levine R.R. Faden C. Grady D. Hammerschmidt L. Eckenwiler J. Sugarman (2004) ArticleTitle“The Limitations of 9Vulnerability’ as a Protection for Human Research Participants American Journal of Bioethics 4 IssueID3 44 Occurrence Handle10.1080/15265160490497083
von Tongeren Paul (1999) ArticleTitle“The Relation of Narrativity and Hermeneutics to an Adequate Practical Ethics Eubios Journal of Asian and International Bioethics 9 130–134
C Thomasma David (1997) ArticleTitleBioethics and International Human Rights Journal of Law, Medicine and Ethics 24 295–306
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Kissell, J. “Suspended Animation,” My Mother’s Wife and Cultural Discernment: Considerations for Genetic Research among Immigrants. Theor Med Bioeth 26, 515–528 (2005). https://doi.org/10.1007/s11017-005-2200-3
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DOI: https://doi.org/10.1007/s11017-005-2200-3