The individual and the community in international genetic research

Journal of Clinical Ethics

Volumn 15, Issue 1, 2004, Pages 76-86

  Marshall, Patricia A ^a  

^a CASE WESTERN RESERVE UNIVERSITY SCHOOL OF MEDICINE   (United States)

Author keywords

[No Author keywords available]

Indexed keywords

COMMUNITY; COMPREHENSION; CONFERENCE PAPER; CONSULTATION; GENETIC ANALYSIS; GENOMICS; HUMAN; INFORMED CONSENT; LANGUAGE; MEDICAL RESEARCH; POPULATION; RISK BENEFIT ANALYSIS;

BIOMEDICAL AND BEHAVIORAL RESEARCH; GENETICS AND REPRODUCTION;

GENETIC RESEARCH; HUMAN EXPERIMENTATION; HUMANS; INFORMED CONSENT; INTERNATIONAL COOPERATION; PATIENT RIGHTS; PREJUDICE;

EID: 3242709476     PISSN: 10467890     EISSN: None     Source Type: Journal    
DOI: None     Document Type: Conference Paper

References (91)

1. R. Macklin, "After Helsinki: Unresolved Issues in International Research," Kennedy Institute of Ethics Journal 11 (2001): 17-35; J. Killen et al., "Ethics of Clinical Research in the Developing World," Nature Reviews 2 (2002): 210-5; S. Benatar, "Reflections and Recommendations in Research Ethics in Developing Countries," Social Science and Medicine 54 (2002): 1131-41.
2. R. Macklin, "After Helsinki: Unresolved Issues in International Research," Kennedy Institute of Ethics Journal 11 (2001): 17-35; J. Killen et al., "Ethics of Clinical Research in the Developing World," Nature Reviews 2 (2002): 210-5; S. Benatar, "Reflections and Recommendations in Research Ethics in Developing Countries," Social Science and Medicine 54 (2002): 1131-41.
3. R. Macklin, "After Helsinki: Unresolved Issues in International Research," Kennedy Institute of Ethics Journal 11 (2001): 17-35; J. Killen et al., "Ethics of Clinical Research in the Developing World," Nature Reviews 2 (2002): 210-5; S. Benatar, "Reflections and Recommendations in Research Ethics in Developing Countries," Social Science and Medicine 54 (2002): 1131-41.
4. D. Nelkin and S. Lindee, The DNA Mystique: The Gene as a Cultural Icon (New York: W.H. Freeman, 1995); C. Condit, The Meanings of the Gene: Public Debates about Human Heredity (Madison, Wis.: University of Wisconsin Press, 1999); L. Andrews, Future Perfect: Confronting Decisions about Genetics (New York: Columbia University Press, 2001). J. Alper, C. Ard, and A. Asch, ed., The Double-Edged Helix: Social Implications of Genetics in a Diverse World (Baltimore, Md.: Johns Hopkins University Press, 2002); A.H. Goodman, D. Heath, and M.S. Lindee, ed., Genetic Nature/Culture (Berkeley, Calif.: University of California Press, 2003).
5. D. Nelkin and S. Lindee, The DNA Mystique: The Gene as a Cultural Icon (New York: W.H. Freeman, 1995); C. Condit, The Meanings of the Gene: Public Debates about Human Heredity (Madison, Wis.: University of Wisconsin Press, 1999); L. Andrews, Future Perfect: Confronting Decisions about Genetics (New York: Columbia University Press, 2001). J. Alper, C. Ard, and A. Asch, ed., The Double-Edged Helix: Social Implications of Genetics in a Diverse World (Baltimore, Md.: Johns Hopkins University Press, 2002); A.H. Goodman, D. Heath, and M.S. Lindee, ed., Genetic Nature/ Culture (Berkeley, Calif.: University of California Press, 2003).
6. D. Nelkin and S. Lindee, The DNA Mystique: The Gene as a Cultural Icon (New York: W.H. Freeman, 1995); C. Condit, The Meanings of the Gene: Public Debates about Human Heredity (Madison, Wis.: University of Wisconsin Press, 1999); L. Andrews, Future Perfect: Confronting Decisions about Genetics (New York: Columbia University Press, 2001). J. Alper, C. Ard, and A. Asch, ed., The Double-Edged Helix: Social Implications of Genetics in a Diverse World (Baltimore, Md.: Johns Hopkins University Press, 2002); A.H. Goodman, D. Heath, and M.S. Lindee, ed., Genetic Nature/ Culture (Berkeley, Calif.: University of California Press, 2003).
7. D. Nelkin and S. Lindee, The DNA Mystique: The Gene as a Cultural Icon (New York: W.H. Freeman, 1995); C. Condit, The Meanings of the Gene: Public Debates about Human Heredity (Madison, Wis.: University of Wisconsin Press, 1999); L. Andrews, Future Perfect: Confronting Decisions about Genetics (New York: Columbia University Press, 2001). J. Alper, C. Ard, and A. Asch, ed., The Double-Edged Helix: Social Implications of Genetics in a Diverse World (Baltimore, Md.: Johns Hopkins University Press, 2002); A.H. Goodman, D. Heath, and M.S. Lindee, ed., Genetic Nature/ Culture (Berkeley, Calif.: University of California Press, 2003).
8. D. Nelkin and S. Lindee, The DNA Mystique: The Gene as a Cultural Icon (New York: W.H. Freeman, 1995); C. Condit, The Meanings of the Gene: Public Debates about Human Heredity (Madison, Wis.: University of Wisconsin Press, 1999); L. Andrews, Future Perfect: Confronting Decisions about Genetics (New York: Columbia University Press, 2001). J. Alper, C. Ard, and A. Asch, ed., The Double-Edged Helix: Social Implications of Genetics in a Diverse World (Baltimore, Md.: Johns Hopkins University Press, 2002); A.H. Goodman, D. Heath, and M.S. Lindee, ed., Genetic Nature/ Culture (Berkeley, Calif.: University of California Press, 2003).
9. See for example, N. Risch et al., "Categorization of Humans in Biomedical Research: Genes, Race and Disease," Genome Biology 3 (2002): 1-12; S.S. Lee, J. Mountain, and B.A. Koenig, "The Meanings of 'Race' in the New Genomics: Implications for Health Disparities Research," Yale Journal of Health Policy, Law, and Ethics 1 (2001): 33-76, p 34; C. Rotimi, "Genetic Ancestry Tracing and the African Identity: A Double-Edged Sword?" Developing World Bioethics, no. 2 (2003): 151-8; R.S. Cooper, J. Kaufman, and R. Ward, "Race and Genomics," New England Journal of Medicine 348, no. 12 (2003): 1166-75; P. Sankar and M.K. Cho, "Toward a New Vocabulary of Human Genetic Variation," Science 298 (2002): 1337-8.
10. See for example, N. Risch et al., "Categorization of Humans in Biomedical Research: Genes, Race and Disease," Genome Biology 3 (2002): 1-12; S.S. Lee, J. Mountain, and B.A. Koenig, "The Meanings of 'Race' in the New Genomics: Implications for Health Disparities Research," Yale Journal of Health Policy, Law, and Ethics 1 (2001): 33-76, p 34; C. Rotimi, "Genetic Ancestry Tracing and the African Identity: A Double-Edged Sword?" Developing World Bioethics, no. 2 (2003): 151-8; R.S. Cooper, J. Kaufman, and R. Ward, "Race and Genomics," New England Journal of Medicine 348, no. 12 (2003): 1166-75; P. Sankar and M.K. Cho, "Toward a New Vocabulary of Human Genetic Variation," Science 298 (2002): 1337-8.
11. See for example, N. Risch et al., "Categorization of Humans in Biomedical Research: Genes, Race and Disease," Genome Biology 3 (2002): 1-12; S.S. Lee, J. Mountain, and B.A. Koenig, "The Meanings of 'Race' in the New Genomics: Implications for Health Disparities Research," Yale Journal of Health Policy, Law, and Ethics 1 (2001): 33-76, p 34; C. Rotimi, "Genetic Ancestry Tracing and the African Identity: A Double-Edged Sword?" Developing World Bioethics, no. 2 (2003): 151-8; R.S. Cooper, J. Kaufman, and R. Ward, "Race and Genomics," New England Journal of Medicine 348, no. 12 (2003): 1166-75; P. Sankar and M.K. Cho, "Toward a New Vocabulary of Human Genetic Variation," Science 298 (2002): 1337-8.
12. See for example, N. Risch et al., "Categorization of Humans in Biomedical Research: Genes, Race and Disease," Genome Biology 3 (2002): 1-12; S.S. Lee, J. Mountain, and B.A. Koenig, "The Meanings of 'Race' in the New Genomics: Implications for Health Disparities Research," Yale Journal of Health Policy, Law, and Ethics 1 (2001): 33-76, p 34; C. Rotimi, "Genetic Ancestry Tracing and the African Identity: A Double-Edged Sword?" Developing World Bioethics, no. 2 (2003): 151-8; R.S. Cooper, J. Kaufman, and R. Ward, "Race and Genomics," New England Journal of Medicine 348, no. 12 (2003): 1166-75; P. Sankar and M.K. Cho, "Toward a New Vocabulary of Human Genetic Variation," Science 298 (2002): 1337-8.
13. See for example, N. Risch et al., "Categorization of Humans in Biomedical Research: Genes, Race and Disease," Genome Biology 3 (2002): 1-12; S.S. Lee, J. Mountain, and B.A. Koenig, "The Meanings of 'Race' in the New Genomics: Implications for Health Disparities Research," Yale Journal of Health Policy, Law, and Ethics 1 (2001): 33-76, p 34; C. Rotimi, "Genetic Ancestry Tracing and the African Identity: A Double-Edged Sword?" Developing World Bioethics, no. 2 (2003): 151-8; R.S. Cooper, J. Kaufman, and R. Ward, "Race and Genomics," New England Journal of Medicine 348, no. 12 (2003): 1166-75; P. Sankar and M.K. Cho, "Toward a New Vocabulary of Human Genetic Variation," Science 298 (2002): 1337-8.
14. E.J. Emanuel et al., "What Makes Clinical Research in Developing Countries Ethical?" Journal of Infectious Diseases 189 (2004): 930-7.
15. L.M. Beskow, "Informed Consent for Population-Based Research Involving Genetics," Journal American Medical Association 286, no. 18 (2001): 2315-21.
16. U.S. National Commission of the Protection of Human Subjects of Biomedical and Behavioral Research, The Belmont Report: Ethical Principles and Guidelines for the Protection of Human Subjects of Research (Washington, D.C.: U.S. Government Printing Office, 1978); World Health Organization and Council for International Organizations of Medical Sciences (WHO-CIOMS), International Ethical Guidelines for Biomedical Research Involving Human Subjects (Geneva: World Health Organization, 1993); World Medical Association, Declaration of Helsinki, as amended by the WMA 52nd General Assembly, Edinburgh, Scotland, October, 2000 (Ferney-Voltaire, France: WMA, 2000); National Bioethics Advisory Commission, Ethical and Policy Issues in International research: Clinical Trials in Developing Countries, vol. 1 and vol. 2, (Bethesda, Md.: NBAC, 2001); Nuffield Council on Bioethics, The Ethics of Research Related to Healthcare in Developing Countries (London: Nuffield Foundation, 2002).
17. U.S. National Commission of the Protection of Human Subjects of Biomedical and Behavioral Research, The Belmont Report: Ethical Principles and Guidelines for the Protection of Human Subjects of Research (Washington, D.C.: U.S. Government Printing Office, 1978); World Health Organization and Council for International Organizations of Medical Sciences (WHO-CIOMS), International Ethical Guidelines for Biomedical Research Involving Human Subjects (Geneva: World Health Organization, 1993); World Medical Association, Declaration of Helsinki, as amended by the WMA 52nd General Assembly, Edinburgh, Scotland, October, 2000 (Ferney-Voltaire, France: WMA, 2000); National Bioethics Advisory Commission, Ethical and Policy Issues in International research: Clinical Trials in Developing Countries, vol. 1 and vol. 2, (Bethesda, Md.: NBAC, 2001); Nuffield Council on Bioethics, The Ethics of Research Related to Healthcare in Developing Countries (London: Nuffield Foundation, 2002).
18. U.S. National Commission of the Protection of Human Subjects of Biomedical and Behavioral Research, The Belmont Report: Ethical Principles and Guidelines for the Protection of Human Subjects of Research (Washington, D.C.: U.S. Government Printing Office, 1978); World Health Organization and Council for International Organizations of Medical Sciences (WHO-CIOMS), International Ethical Guidelines for Biomedical Research Involving Human Subjects (Geneva: World Health Organization, 1993); World Medical Association, Declaration of Helsinki, as amended by the WMA 52nd General Assembly, Edinburgh, Scotland, October, 2000 (Ferney-Voltaire, France: WMA, 2000); National Bioethics Advisory Commission, Ethical and Policy Issues in International research: Clinical Trials in Developing Countries, vol. 1 and vol. 2, (Bethesda, Md.: NBAC, 2001); Nuffield Council on Bioethics, The Ethics of Research Related to Healthcare in Developing Countries (London: Nuffield Foundation, 2002).
19. U.S. National Commission of the Protection of Human Subjects of Biomedical and Behavioral Research, The Belmont Report: Ethical Principles and Guidelines for the Protection of Human Subjects of Research (Washington, D.C.: U.S. Government Printing Office, 1978); World Health Organization and Council for International Organizations of Medical Sciences (WHO-CIOMS), International Ethical Guidelines for Biomedical Research Involving Human Subjects (Geneva: World Health Organization, 1993); World Medical Association, Declaration of Helsinki, as amended by the WMA 52nd General Assembly, Edinburgh, Scotland, October, 2000 (Ferney-Voltaire, France: WMA, 2000); National Bioethics Advisory Commission, Ethical and Policy Issues in International research: Clinical Trials in Developing Countries, vol. 1 and vol. 2, (Bethesda, Md.: NBAC, 2001); Nuffield Council on Bioethics, The Ethics of Research Related to Healthcare in Developing Countries (London: Nuffield Foundation, 2002).
20. U.S. National Commission of the Protection of Human Subjects of Biomedical and Behavioral Research, The Belmont Report: Ethical Principles and Guidelines for the Protection of Human Subjects of Research (Washington, D.C.: U.S. Government Printing Office, 1978); World Health Organization and Council for International Organizations of Medical Sciences (WHO-CIOMS), International Ethical Guidelines for Biomedical Research Involving Human Subjects (Geneva: World Health Organization, 1993); World Medical Association, Declaration of Helsinki, as amended by the WMA 52nd General Assembly, Edinburgh, Scotland, October, 2000 (Ferney-Voltaire, France: WMA, 2000); National Bioethics Advisory Commission, Ethical and Policy Issues in International research: Clinical Trials in Developing Countries, vol. 1 and vol. 2, (Bethesda, Md.: NBAC, 2001); Nuffield Council on Bioethics, The Ethics of Research Related to Healthcare in Developing Countries (London: Nuffield Foundation, 2002).
21. R.J. Levine, "Informed Consent: Some Challenges to the Universal Validity of the Western Mode," Law, Medicine, and Health Care 19 (1991): 3-4; MD. E. Agard, D. Finkelstein and E. Wallach, "Cultural Diversity and Informed Consent," The Journal of Clinical Ethics 9, no. 2 (1998): 173-6; P.A. Marshall, "The Relevance of Culture for Informed Consent In U.S.-Funded International Health Research," in Ethical and Policy Issues in International Research: Clinical Trials in Developing Countries, vol. 3 (Bethesda, Md.: NBAC; 2001), C1-38); I. Hyun, "Waiver of Informed Consent, Cultural Sensitivity, and the Problems of Unjust Families and Traditions," Hastings Center Report 32, no. 5 (2002): 14-22.
22. R.J. Levine, "Informed Consent: Some Challenges to the Universal Validity of the Western Mode," Law, Medicine, and Health Care 19 (1991): 3-4; MD. E. Agard, D. Finkelstein and E. Wallach, "Cultural Diversity and Informed Consent," The Journal of Clinical Ethics 9, no. 2 (1998): 173-6; P.A. Marshall, "The Relevance of Culture for Informed Consent In U.S.-Funded International Health Research," in Ethical and Policy Issues in International Research: Clinical Trials in Developing Countries, vol. 3 (Bethesda, Md.: NBAC; 2001), C1-38); I. Hyun, "Waiver of Informed Consent, Cultural Sensitivity, and the Problems of Unjust Families and Traditions," Hastings Center Report 32, no. 5 (2002): 14-22.
23. R.J. Levine, "Informed Consent: Some Challenges to the Universal Validity of the Western Mode," Law, Medicine, and Health Care 19 (1991): 3-4; MD. E. Agard, D. Finkelstein and E. Wallach, "Cultural Diversity and Informed Consent," The Journal of Clinical Ethics 9, no. 2 (1998): 173-6; P.A. Marshall, "The Relevance of Culture for Informed Consent In U.S.-Funded International Health Research," in Ethical and Policy Issues in International Research: Clinical Trials in Developing Countries, vol. 3 (Bethesda, Md.: NBAC; 2001), C1-38); I. Hyun, "Waiver of Informed Consent, Cultural Sensitivity, and the Problems of Unjust Families and Traditions," Hastings Center Report 32, no. 5 (2002): 14-22.
24. R.J. Levine, "Informed Consent: Some Challenges to the Universal Validity of the Western Mode," Law, Medicine, and Health Care 19 (1991): 3-4; MD. E. Agard, D. Finkelstein and E. Wallach, "Cultural Diversity and Informed Consent," The Journal of Clinical Ethics 9, no. 2 (1998): 173-6; P.A. Marshall, "The Relevance of Culture for Informed Consent In U.S.-Funded International Health Research," in Ethical and Policy Issues in International Research: Clinical Trials in Developing Countries, vol. 3 (Bethesda, Md.: NBAC; 2001), C1-38); I. Hyun, "Waiver of Informed Consent, Cultural Sensitivity, and the Problems of Unjust Families and Traditions," Hastings Center Report 32, no. 5 (2002): 14-22.
25. L. Turner, "Zones of Consensus and Zones of Conflict: Questioning the Common Morality Presumption in Bioethics," Kennedy Institute of Ethics Journal 13 (2003): 219-31.
26. A. Dula and S. Goering, ed., "It Just Ain't Fair": The Ethics of Health Care for African Americans (Westport, Conn.: Praeger, 1994); W. El-Sadre and L. Capps, "The Challenge of Minority Recruitment for Clinical Trials," Journal of the American Medical Association 1267 (1992): 954-7; J. Jones, Bad Blood: The Tuskegee Syphilis Experiment (New York: Free Press, 1993).
27. A. Dula and S. Goering, ed., "It Just Ain't Fair": The Ethics of Health Care for African Americans (Westport, Conn.: Praeger, 1994); W. El-Sadre and L. Capps, "The Challenge of Minority Recruitment for Clinical Trials," Journal of the American Medical Association 1267 (1992): 954-7; J. Jones, Bad Blood: The Tuskegee Syphilis Experiment (New York: Free Press, 1993).
28. A. Dula and S. Goering, ed., "It Just Ain't Fair": The Ethics of Health Care for African Americans (Westport, Conn.: Praeger, 1994); W. El-Sadre and L. Capps, "The Challenge of Minority Recruitment for Clinical Trials," Journal of the American Medical Association 1267 (1992): 954-7; J. Jones, Bad Blood: The Tuskegee Syphilis Experiment (New York: Free Press, 1993).
29. J.R. Ogloff and R.K. Otto, "Are Research Participants Truly Informed? Readability of Informed Consent Forms Used in Research," Ethics & Behavior 1, no. 4 (1991): 239-52; C.D. Meade and D.M. Howser, "Consent Forms: How to Determine and Improve Their Readability," Oncology Nursing Forum 19, no. 10 (1992): 1523-8.; A.O. Goldstein et al., "Consent Form Readability in University-Sponsored Research," Journal of Family Practice 42, no. 6 (1996): 606-11; W.L. Freeman, "Making Research Consent Forms Informative and Understandable: The Experience of the Indian Health Service," Cambridge Quarterly of Healthcare Ethics 3 (1994): 510-21.
30. J.R. Ogloff and R.K. Otto, "Are Research Participants Truly Informed? Readability of Informed Consent Forms Used in Research," Ethics & Behavior 1, no. 4 (1991): 239-52; C.D. Meade and D.M. Howser, "Consent Forms: How to Determine and Improve Their Readability," Oncology Nursing Forum 19, no. 10 (1992): 1523-8.; A.O. Goldstein et al., "Consent Form Readability in University-Sponsored Research," Journal of Family Practice 42, no. 6 (1996): 606-11; W.L. Freeman, "Making Research Consent Forms Informative and Understandable: The Experience of the Indian Health Service," Cambridge Quarterly of Healthcare Ethics 3 (1994): 510-21.
31. J.R. Ogloff and R.K. Otto, "Are Research Participants Truly Informed? Readability of Informed Consent Forms Used in Research," Ethics & Behavior 1, no. 4 (1991): 239-52; C.D. Meade and D.M. Howser, "Consent Forms: How to Determine and Improve Their Readability," Oncology Nursing Forum 19, no. 10 (1992): 1523-8.; A.O. Goldstein et al., "Consent Form Readability in University-Sponsored Research," Journal of Family Practice 42, no. 6 (1996): 606-11; W.L. Freeman, "Making Research Consent Forms Informative and Understandable: The Experience of the Indian Health Service," Cambridge Quarterly of Healthcare Ethics 3 (1994): 510-21.
32. J.R. Ogloff and R.K. Otto, "Are Research Participants Truly Informed? Readability of Informed Consent Forms Used in Research," Ethics & Behavior 1, no. 4 (1991): 239-52; C.D. Meade and D.M. Howser, "Consent Forms: How to Determine and Improve Their Readability," Oncology Nursing Forum 19, no. 10 (1992): 1523-8.; A.O. Goldstein et al., "Consent Form Readability in University-Sponsored Research," Journal of Family Practice 42, no. 6 (1996): 606-11; W.L. Freeman, "Making Research Consent Forms Informative and Understandable: The Experience of the Indian Health Service," Cambridge Quarterly of Healthcare Ethics 3 (1994): 510-21.
33. P.A. Marshall, "Ethical Challenges in Genomic and Genetic Research in Africa: Implications for Informed Consent and IRB Protocol Review," (paper presented at the First Annual Meeting of the African Society for Human Genetics, Accra, Ghana, 8 December, 2003).
34. B.A. Koenig and H. Silverberg, "Understanding Probabilistic Risk in Predisposition Genetic Testing for Alzheimers Disease," Genetic Testing 3, no. 1 (1999): 55-63; N. Press, J.R. Fishman and B.A. Koenig, "Collective Fear, Individualized Risk: The Social and Cultural Context of Genetic Screening for Breast Cancer," Nursing Ethics 7, no. 3 (2000): 237-49. P.R. Reilly, "Rethinking Risks to Human Subjects in Genetic Research, American Journal Human Genetics 63 (1998): 682-5.
35. B.A. Koenig and H. Silverberg, "Understanding Probabilistic Risk in Predisposition Genetic Testing for Alzheimers Disease," Genetic Testing 3, no. 1 (1999): 55-63; N. Press, J.R. Fishman and B.A. Koenig, "Collective Fear, Individualized Risk: The Social and Cultural Context of Genetic Screening for Breast Cancer," Nursing Ethics 7, no. 3 (2000): 237-49. P.R. Reilly, "Rethinking Risks to Human Subjects in Genetic Research, American Journal Human Genetics 63 (1998): 682-5.
36. B.A. Koenig and H. Silverberg, "Understanding Probabilistic Risk in Predisposition Genetic Testing for Alzheimers Disease," Genetic Testing 3, no. 1 (1999): 55-63; N. Press, J.R. Fishman and B.A. Koenig, "Collective Fear, Individualized Risk: The Social and Cultural Context of Genetic Screening for Breast Cancer," Nursing Ethics 7, no. 3 (2000): 237-49. P.R. Reilly, "Rethinking Risks to Human Subjects in Genetic Research, American Journal Human Genetics 63 (1998): 682-5.
37. J.A. Carrese and L.A. Rhodes, "Western Bioethics on the Navajo Reservation," Journal American Medical Association 274 (1995): 826-9.
38. R. Weir, Stored Tissue Samples: Ethical, Legal, and Public Policy Implications (Iowa City, Iowa: University of Iowa Press, 1998); A. Buchanan, "An Ethical Framework for Biological Samples Policy," in NBAC, Research Involving Human Biological Materials: Ethical Issues and Policy Guidance, vol. 2, (Rockville, Md.: NBAC, 2000), B1-31.
39. R. Weir, Stored Tissue Samples: Ethical, Legal, and Public Policy Implications (Iowa City, Iowa: University of Iowa Press, 1998); A. Buchanan, "An Ethical Framework for Biological Samples Policy," in NBAC, Research Involving Human Biological Materials: Ethical Issues and Policy Guidance, vol. 2, (Rockville, Md.: NBAC, 2000), B1-31.
40. American Society of Human Genetics, "Rapid Action Taskforce on Informed Consent for Genetic Research, Statement on Informed Consent for Genetic Research," American Journal of Human Genetics 59 (1996): 471-4.
41. E.W. Clayton et al., "Informed Consent for Genetic Research on Stored Tissue Samples," Journal of the American Medical Association 274, no. 22 (13 December 1995): 1786-92;
42. J.M. Kaufert, J.D. O'Neil, and D. John, "Biomedical Rituals and Informed Consent: Native Canadians and the Negotiation of Clinical Trust," in Social Science Perspectives on Medical Ethics, ed. G. Weisz (Philadelphia, Pa.: University of Pennsylvania Press, 1990); D.M. Barnes et al., "Informed Consent in a Multicultural Cancer Patient Population: Implications for Nursing Practice," Nursing Ethics 5, no. 5 (1998): 412-23; M. Kuczewski and P.A. Marshall, "Decision Dynamics in Clinical Research: The Context and Process of Informed Consent," Medical Care 40, no. 9, suppl. V (2002): 45-54.
43. J.M. Kaufert, J.D. O'Neil, and D. John, "Biomedical Rituals and Informed Consent: Native Canadians and the Negotiation of Clinical Trust," in Social Science Perspectives on Medical Ethics, ed. G. Weisz (Philadelphia, Pa.: University of Pennsylvania Press, 1990); D.M. Barnes et al., "Informed Consent in a Multicultural Cancer Patient Population: Implications for Nursing Practice," Nursing Ethics 5, no. 5 (1998): 412-23; M. Kuczewski and P.A. Marshall, "Decision Dynamics in Clinical Research: The Context and Process of Informed Consent," Medical Care 40, no. 9, suppl. V (2002): 45-54.
44. J.M. Kaufert, J.D. O'Neil, and D. John, "Biomedical Rituals and Informed Consent: Native Canadians and the Negotiation of Clinical Trust," in Social Science Perspectives on Medical Ethics, ed. G. Weisz (Philadelphia, Pa.: University of Pennsylvania Press, 1990); D.M. Barnes et al., "Informed Consent in a Multicultural Cancer Patient Population: Implications for Nursing Practice," Nursing Ethics 5, no. 5 (1998): 412-23; M. Kuczewski and P.A. Marshall, "Decision Dynamics in Clinical Research: The Context and Process of Informed Consent," Medical Care 40, no. 9, suppl. V (2002): 45-54.
45. J.M. Kaufert and R.W. Putsch, "Communication through Interpreters in Healthcare: Ethical Dilemmas Arising from Differences in Class, Culture, Language, and Power," The Journal of Clinical Ethics 8, no. 1 (Spring 1997): 71-87.
46. See, for example, N.A. Christakis, "Ethics Are Local: Engaging Cross-Cultural Variation in the Ethics for Clinical Research," Social Science and Medicine 35 (1992): 1079-91; P.A. Marshall, "Anthropology and Bioethics," Medical Anthropology Quarterly 6 (1992): 49-73; S. Loue, D. Okello, and M. Kawuma, "Research Bioethics in the Ugandan Context: A Program Summary," Journal of Law, Medicine and Ethics 124 (1996): 47-53; P.A. Marshall and B.A. Koenig, "Anthropology and Bioethics: Perspectives on Culture, Medicine and Morality," in Medical Anthropology: Contemporary Theory and Method, 2nd ed., ed. C. Sargent and T. Johnson (Westport, Conn.: Praeger Publishing, 1996); P.A. Marshall et al., "Ethical Issues in Immigrant Health Care and Clinical Research," in Handbook of Immigrant Health, ed. S. Loue (New York: Plenum Press, 1998), 203-26; L. Turner, "Bioethics in a Multicultural World: Medicine and Morality in Pluralistic Settings," Health Care Analysis 11, no. 2 (2003): 99-117; see P.A. Marshall, note 7 above; see R. Levine, note 7 above.
47. See, for example, N.A. Christakis, "Ethics Are Local: Engaging Cross-Cultural Variation in the Ethics for Clinical Research," Social Science and Medicine 35 (1992): 1079-91; P.A. Marshall, "Anthropology and Bioethics," Medical Anthropology Quarterly 6 (1992): 49-73; S. Loue, D. Okello, and M. Kawuma, "Research Bioethics in the Ugandan Context: A Program Summary," Journal of Law, Medicine and Ethics 124 (1996): 47-53; P.A. Marshall and B.A. Koenig, "Anthropology and Bioethics: Perspectives on Culture, Medicine and Morality," in Medical Anthropology: Contemporary Theory and Method, 2nd ed., ed. C. Sargent and T. Johnson (Westport, Conn.: Praeger Publishing, 1996); P.A. Marshall et al., "Ethical Issues in Immigrant Health Care and Clinical Research," in Handbook of Immigrant Health, ed. S. Loue (New York: Plenum Press, 1998), 203-26; L. Turner, "Bioethics in a Multicultural World: Medicine and Morality in Pluralistic Settings," Health Care Analysis 11, no. 2 (2003): 99-117; see P.A. Marshall, note 7 above; see R. Levine, note 7 above.
48. See, for example, N.A. Christakis, "Ethics Are Local: Engaging Cross-Cultural Variation in the Ethics for Clinical Research," Social Science and Medicine 35 (1992): 1079-91; P.A. Marshall, "Anthropology and Bioethics," Medical Anthropology Quarterly 6 (1992): 49-73; S. Loue, D. Okello, and M. Kawuma, "Research Bioethics in the Ugandan Context: A Program Summary," Journal of Law, Medicine and Ethics 124 (1996): 47-53; P.A. Marshall and B.A. Koenig, "Anthropology and Bioethics: Perspectives on Culture, Medicine and Morality," in Medical Anthropology: Contemporary Theory and Method, 2nd ed., ed. C. Sargent and T. Johnson (Westport, Conn.: Praeger Publishing, 1996); P.A. Marshall et al., "Ethical Issues in Immigrant Health Care and Clinical Research," in Handbook of Immigrant Health, ed. S. Loue (New York: Plenum Press, 1998), 203-26; L. Turner, "Bioethics in a Multicultural World: Medicine and Morality in Pluralistic Settings," Health Care Analysis 11, no. 2 (2003): 99-117; see P.A. Marshall, note 7 above; see R. Levine, note 7 above.
49. See, for example, N.A. Christakis, "Ethics Are Local: Engaging Cross-Cultural Variation in the Ethics for Clinical Research," Social Science and Medicine 35 (1992): 1079-91; P.A. Marshall, "Anthropology and Bioethics," Medical Anthropology Quarterly 6 (1992): 49-73; S. Loue, D. Okello, and M. Kawuma, "Research Bioethics in the Ugandan Context: A Program Summary," Journal of Law, Medicine and Ethics 124 (1996): 47-53; P.A. Marshall and B.A. Koenig, "Anthropology and Bioethics: Perspectives on Culture, Medicine and Morality," in Medical Anthropology: Contemporary Theory and Method, 2nd ed., ed. C. Sargent and T. Johnson (Westport, Conn.: Praeger Publishing, 1996); P.A. Marshall et al., "Ethical Issues in Immigrant Health Care and Clinical Research," in Handbook of Immigrant Health, ed. S. Loue (New York: Plenum Press, 1998), 203-26; L. Turner, "Bioethics in a Multicultural World: Medicine and Morality in Pluralistic Settings," Health Care Analysis 11, no. 2 (2003): 99-117; see P.A. Marshall, note 7 above; see R. Levine, note 7 above.
50. See, for example, N.A. Christakis, "Ethics Are Local: Engaging Cross-Cultural Variation in the Ethics for Clinical Research," Social Science and Medicine 35 (1992): 1079-91; P.A. Marshall, "Anthropology and Bioethics," Medical Anthropology Quarterly 6 (1992): 49-73; S. Loue, D. Okello, and M. Kawuma, "Research Bioethics in the Ugandan Context: A Program Summary," Journal of Law, Medicine and Ethics 124 (1996): 47-53; P.A. Marshall and B.A. Koenig, "Anthropology and Bioethics: Perspectives on Culture, Medicine and Morality," in Medical Anthropology: Contemporary Theory and Method, 2nd ed., ed. C. Sargent and T. Johnson (Westport, Conn.: Praeger Publishing, 1996); P.A. Marshall et al., "Ethical Issues in Immigrant Health Care and Clinical Research," in Handbook of Immigrant Health, ed. S. Loue (New York: Plenum Press, 1998), 203-26; L. Turner, "Bioethics in a Multicultural World: Medicine and Morality in Pluralistic Settings," Health Care Analysis 11, no. 2 (2003): 99-117; see P.A. Marshall, note 7 above; see R. Levine, note 7 above.
51. See, for example, N.A. Christakis, "Ethics Are Local: Engaging Cross-Cultural Variation in the Ethics for Clinical Research," Social Science and Medicine 35 (1992): 1079-91; P.A. Marshall, "Anthropology and Bioethics," Medical Anthropology Quarterly 6 (1992): 49-73; S. Loue, D. Okello, and M. Kawuma, "Research Bioethics in the Ugandan Context: A Program Summary," Journal of Law, Medicine and Ethics 124 (1996): 47-53; P.A. Marshall and B.A. Koenig, "Anthropology and Bioethics: Perspectives on Culture, Medicine and Morality," in Medical Anthropology: Contemporary Theory and Method, 2nd ed., ed. C. Sargent and T. Johnson (Westport, Conn.: Praeger Publishing, 1996); P.A. Marshall et al., "Ethical Issues in Immigrant Health Care and Clinical Research," in Handbook of Immigrant Health, ed. S. Loue (New York: Plenum Press, 1998), 203-26; L. Turner, "Bioethics in a Multicultural World: Medicine and Morality in Pluralistic Settings," Health Care Analysis 11, no. 2 (2003): 99-117; see P.A. Marshall, note 7 above; see R. Levine, note 7 above.
52. See, for example, N.A. Christakis, "Ethics Are Local: Engaging Cross-Cultural Variation in the Ethics for Clinical Research," Social Science and Medicine 35 (1992): 1079-91; P.A. Marshall, "Anthropology and Bioethics," Medical Anthropology Quarterly 6 (1992): 49-73; S. Loue, D. Okello, and M. Kawuma, "Research Bioethics in the Ugandan Context: A Program Summary," Journal of Law, Medicine and Ethics 124 (1996): 47-53; P.A. Marshall and B.A. Koenig, "Anthropology and Bioethics: Perspectives on Culture, Medicine and Morality," in Medical Anthropology: Contemporary Theory and Method, 2nd ed., ed. C. Sargent and T. Johnson (Westport, Conn.: Praeger Publishing, 1996); P.A. Marshall et al., "Ethical Issues in Immigrant Health Care and Clinical Research," in Handbook of Immigrant Health, ed. S. Loue (New York: Plenum Press, 1998), 203-26; L. Turner, "Bioethics in a Multicultural World: Medicine and Morality in Pluralistic Settings," Health Care Analysis 11, no. 2 (2003): 99-117; see P.A. Marshall, note 7 above; see R. Levine, note 7 above.
53. See, for example, N.A. Christakis, "Ethics Are Local: Engaging Cross-Cultural Variation in the Ethics for Clinical Research," Social Science and Medicine 35 (1992): 1079-91; P.A. Marshall, "Anthropology and Bioethics," Medical Anthropology Quarterly 6 (1992): 49-73; S. Loue, D. Okello, and M. Kawuma, "Research Bioethics in the Ugandan Context: A Program Summary," Journal of Law, Medicine and Ethics 124 (1996): 47-53; P.A. Marshall and B.A. Koenig, "Anthropology and Bioethics: Perspectives on Culture, Medicine and Morality," in Medical Anthropology: Contemporary Theory and Method, 2nd ed., ed. C. Sargent and T. Johnson (Westport, Conn.: Praeger Publishing, 1996); P.A. Marshall et al., "Ethical Issues in Immigrant Health Care and Clinical Research," in Handbook of Immigrant Health, ed. S. Loue (New York: Plenum Press, 1998), 203-26; L. Turner, "Bioethics in a Multicultural World: Medicine and Morality in Pluralistic Settings," Health Care Analysis 11, no. 2 (2003): 99-117; see P.A. Marshall, note 7 above; see R. Levine, note 7 above.
54. See for example, A. Macaulay et al., "Participatory Research Maximizes Community and Lay Involvement," British Medical Journal 319 (1999): 774-8; K. MacQueen, E. McLellan, and D Metzger, "What is Community? An Evidence-Based Definition for Participatory Public Health," American Journal of Public Health 91 (2001): 1929-38; R. Strauss et al., "The Role of Community Advisory Boards: Involving Communities in the Informed Consent Process," American Journal of Public Health 91 (2001): 1938-43.
55. See for example, A. Macaulay et al., "Participatory Research Maximizes Community and Lay Involvement," British Medical Journal 319 (1999): 774-8; K. MacQueen, E. McLellan, and D Metzger, "What is Community? An Evidence-Based Definition for Participatory Public Health," American Journal of Public Health 91 (2001): 1929-38; R. Strauss et al., "The Role of Community Advisory Boards: Involving Communities in the Informed Consent Process," American Journal of Public Health 91 (2001): 1938-43.
56. See for example, A. Macaulay et al., "Participatory Research Maximizes Community and Lay Involvement," British Medical Journal 319 (1999): 774-8; K. MacQueen, E. McLellan, and D Metzger, "What is Community? An Evidence-Based Definition for Participatory Public Health," American Journal of Public Health 91 (2001): 1929-38; R. Strauss et al., "The Role of Community Advisory Boards: Involving Communities in the Informed Consent Process," American Journal of Public Health 91 (2001): 1938-43.
57. M. Foster et al., "The Role of Community Review in Evaluating the Risks of Human Genetic Variation Research," American Journal Human Genetics 64 (1999): 1719-27; E.T. Juengst, "Commentary: What Community Review Can and Cannot Do," Journal of Law, Medicine and Ethics 28 (2000): 52-4; D. Davis, "Groups, Communities and Contested Identities in Genetic Research," Hastings Center Report 30 (2000): 38-45.
58. M. Foster et al., "The Role of Community Review in Evaluating the Risks of Human Genetic Variation Research," American Journal Human Genetics 64 (1999): 1719-27; E.T. Juengst, "Commentary: What Community Review Can and Cannot Do," Journal of Law, Medicine and Ethics 28 (2000): 52-4; D. Davis, "Groups, Communities and Contested Identities in Genetic Research," Hastings Center Report 30 (2000): 38-45.
59. M. Foster et al., "The Role of Community Review in Evaluating the Risks of Human Genetic Variation Research," American Journal Human Genetics 64 (1999): 1719-27; E.T. Juengst, "Commentary: What Community Review Can and Cannot Do," Journal of Law, Medicine and Ethics 28 (2000): 52-4; D. Davis, "Groups, Communities and Contested Identities in Genetic Research," Hastings Center Report 30 (2000): 38-45.
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