Involving study populations in the review of genetic research

Journal of Law, Medicine and Ethics

Volumn 28, Issue 1, 2000, Pages 41-51

  Sharp, Richard R ^a   Foster, Morris W ^a  

^a NONE

Author keywords

[No Author keywords available]

Indexed keywords

ARTICLE; BIOMEDICAL AND BEHAVIORAL RESEARCH; ETHICS; GENETIC SCREENING; GENETICS; GENETICS AND REPRODUCTION; HUMAN; INFORMED CONSENT; MEDICAL ETHICS; METHODOLOGY; PATIENT SELECTION; POPULATION GENETICS; PROFESSIONAL STANDARD; RESEARCH SUBJECT; RISK; RISK ASSESSMENT; SOCIAL PSYCHOLOGY;

BIOMEDICAL AND BEHAVIORAL RESEARCH; GENETICS AND REPRODUCTION;

ETHICAL REVIEW; ETHICS COMMITTEES, RESEARCH; ETHICS, MEDICAL; GENETIC RESEARCH; GENETIC SCREENING; GENETICS; GENETICS, POPULATION; HUMANS; PATIENT SELECTION; RESEARCH DESIGN; RESEARCH SUBJECTS; RISK; RISK ASSESSMENT; STEREOTYPING; THIRD-PARTY CONSENT;

EID: 0034153572     PISSN: 10731105     EISSN: None     Source Type: Journal    
DOI: 10.1111/j.1748-720X.2000.tb00315.x     Document Type: Review

References (82)

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9. R.R. Sharp and J.C. Barrett, "The Environmental Genome Project and Bioethics," Kennedy Institute of Ethics Journal 9 (1999): 175-188; National Research Council, Evaluating Human Genetic Diversity (Washington, DC: National Academy Press, 1997); J.M. Samet and L.A. Bailey, "Environmental Population Screening," in M.A. Rothstein, ed., Genetic Secrets: Protecting Privacy and Confidentiality in the Genetic Era (New Haven: Yale University Press, 1997): 197-211; C.L. Soskolne, "Ethical, Social, and Legal Issues Surrounding Studies of Susceptible Populations and Individuals," Environmental Health Perspectives, 105 (1997): 837-841; A.P. Baird, "Identifying People's Genes: Ethical Aspects of DNA Sampling in Populations," Perspectives in Biology and Medicine, 38 (1995): 159-166; E.C. McPherson, "Ethical Implications of the Human Genome Diversity Project," Nursing Connections, 8 (1995): 36-43.
10. R.R. Sharp and J.C. Barrett, "The Environmental Genome Project and Bioethics," Kennedy Institute of Ethics Journal 9 (1999): 175-188; National Research Council, Evaluating Human Genetic Diversity (Washington, DC: National Academy Press, 1997); J.M. Samet and L.A. Bailey, "Environmental Population Screening," in M.A. Rothstein, ed., Genetic Secrets: Protecting Privacy and Confidentiality in the Genetic Era (New Haven: Yale University Press, 1997): 197-211; C.L. Soskolne, "Ethical, Social, and Legal Issues Surrounding Studies of Susceptible Populations and Individuals," Environmental Health Perspectives, 105 (1997): 837-841; A.P. Baird, "Identifying People's Genes: Ethical Aspects of DNA Sampling in Populations," Perspectives in Biology and Medicine, 38 (1995): 159-166; E.C. McPherson, "Ethical Implications of the Human Genome Diversity Project," Nursing Connections, 8 (1995): 36-43.
11. R.R. Sharp and J.C. Barrett, "The Environmental Genome Project and Bioethics," Kennedy Institute of Ethics Journal 9 (1999): 175-188; National Research Council, Evaluating Human Genetic Diversity (Washington, DC: National Academy Press, 1997); J.M. Samet and L.A. Bailey, "Environmental Population Screening," in M.A. Rothstein, ed., Genetic Secrets: Protecting Privacy and Confidentiality in the Genetic Era (New Haven: Yale University Press, 1997): 197-211; C.L. Soskolne, "Ethical, Social, and Legal Issues Surrounding Studies of Susceptible Populations and Individuals," Environmental Health Perspectives, 105 (1997): 837-841; A.P. Baird, "Identifying People's Genes: Ethical Aspects of DNA Sampling in Populations," Perspectives in Biology and Medicine, 38 (1995): 159-166; E.C. McPherson, "Ethical Implications of the Human Genome Diversity Project," Nursing Connections, 8 (1995): 36-43.
12. R.R. Sharp and J.C. Barrett, "The Environmental Genome Project and Bioethics," Kennedy Institute of Ethics Journal 9 (1999): 175-188; National Research Council, Evaluating Human Genetic Diversity (Washington, DC: National Academy Press, 1997); J.M. Samet and L.A. Bailey, "Environmental Population Screening," in M.A. Rothstein, ed., Genetic Secrets: Protecting Privacy and Confidentiality in the Genetic Era (New Haven: Yale University Press, 1997): 197-211; C.L. Soskolne, "Ethical, Social, and Legal Issues Surrounding Studies of Susceptible Populations and Individuals," Environmental Health Perspectives, 105 (1997): 837-841; A.P. Baird, "Identifying People's Genes: Ethical Aspects of DNA Sampling in Populations," Perspectives in Biology and Medicine, 38 (1995): 159-166; E.C. McPherson, "Ethical Implications of the Human Genome Diversity Project," Nursing Connections, 8 (1995): 36-43.
13. R.R. Sharp and J.C. Barrett, "The Environmental Genome Project and Bioethics," Kennedy Institute of Ethics Journal 9 (1999): 175-188; National Research Council, Evaluating Human Genetic Diversity (Washington, DC: National Academy Press, 1997); J.M. Samet and L.A. Bailey, "Environmental Population Screening," in M.A. Rothstein, ed., Genetic Secrets: Protecting Privacy and Confidentiality in the Genetic Era (New Haven: Yale University Press, 1997): 197-211; C.L. Soskolne, "Ethical, Social, and Legal Issues Surrounding Studies of Susceptible Populations and Individuals," Environmental Health Perspectives, 105 (1997): 837-841; A.P. Baird, "Identifying People's Genes: Ethical Aspects of DNA Sampling in Populations," Perspectives in Biology and Medicine, 38 (1995): 159-166; E.C. McPherson, "Ethical Implications of the Human Genome Diversity Project," Nursing Connections, 8 (1995): 36-43.
14. R.R. Sharp and J.C. Barrett, "The Environmental Genome Project and Bioethics," Kennedy Institute of Ethics Journal 9 (1999): 175-188; National Research Council, Evaluating Human Genetic Diversity (Washington, DC: National Academy Press, 1997); J.M. Samet and L.A. Bailey, "Environmental Population Screening," in M.A. Rothstein, ed., Genetic Secrets: Protecting Privacy and Confidentiality in the Genetic Era (New Haven: Yale University Press, 1997): 197-211; C.L. Soskolne, "Ethical, Social, and Legal Issues Surrounding Studies of Susceptible Populations and Individuals," Environmental Health Perspectives, 105 (1997): 837-841; A.P. Baird, "Identifying People's Genes: Ethical Aspects of DNA Sampling in Populations," Perspectives in Biology and Medicine, 38 (1995): 159-166; E.C. McPherson, "Ethical Implications of the Human Genome Diversity Project," Nursing Connections, 8 (1995): 36-43.
15. A.L. Caplan, "Handle with Care: Race, Class, and Genetics," in T.F. Murphy and M.A. Lappe, eds., Justice and the Human Genome Project (Berkeley: University of California Press, 1994): 30-45; P.A. King, "Race, Justice, and Research," in J. Kahn, A. Mastroianni, and J. Sugarman, eds., Beyond Consent: Seeking justice in Research (New York: Oxford University Press, 1998): 88-110.
16. A.L. Caplan, "Handle with Care: Race, Class, and Genetics," in T.F. Murphy and M.A. Lappe, eds., Justice and the Human Genome Project (Berkeley: University of California Press, 1994): 30-45; P.A. King, "Race, Justice, and Research," in J. Kahn, A. Mastroianni, and J. Sugarman, eds., Beyond Consent: Seeking justice in Research (New York: Oxford University Press, 1998): 88-110.
17. S.G. Stolberg, "Concern Among Jews is Heightened as Scientists Deepen Gene Studies," New York Times, April 22, 1998, at A24; J. Struewing, P. Hartge, S. Wacholder, S. Baker, M. Berlin, M. McAdams, M. Timmerman, et al., "The Risk of Cancer Associated with Specific Mutations of BRCA1 and BRCA2 Among Ashkenazi Jews," N. Engl. J Med., 336 (1997): 1401-1408.
18. S.G. Stolberg, "Concern Among Jews is Heightened as Scientists Deepen Gene Studies," New York Times, April 22, 1998, at A24; J. Struewing, P. Hartge, S. Wacholder, S. Baker, M. Berlin, M. McAdams, M. Timmerman, et al., "The Risk of Cancer Associated with Specific Mutations of BRCA1 and BRCA2 Among Ashkenazi Jews," N. Engl. J Med., 336 (1997): 1401-1408.
19. M.W. Foster, R.R. Sharp, W.L. Freeman, M. Chino, D. Bernsten, and T.H. Carter, "The Role of Community Review in Evaluating the Risks of Human Genetic Variation Research," American Journal of Human Genetics, 64 (1999): 1719-1727; M.W. Foster, D. Bersten, and T.H. Carter, "A Model Agreement for Genetic Research in Socially Identifiable Populations," American Journal of Human Genetics, 63 (1998): 696-702; M.W. Foster, A.J. Eisenbraun, and T.H. Carter, "Genetic Screening of Targeted Subpopulations: The Role of Communal Discourse in Evaluating Sociocultural Implications," Genetic Testing, 1 (1997/98.): 269-274; H.T. Greely, "The Control of Genetic Research: Involving the 'Groups Between,'" Houston Law Review, 33 (1997): 1397-1430; North American Regional Committee of the Human Genome Diversity Project, "Proposed Model Ethical Protocol for Collecting DNA Samples," Houston Law Review, 33 (1997): 1431-1473; Human Genome Diversity Committee of the Human Genome Organisation, The Human Genome Diversity Project: Summary Document (London: Human Genome Organisation, 1994).
20. M.W. Foster, R.R. Sharp, W.L. Freeman, M. Chino, D. Bernsten, and T.H. Carter, "The Role of Community Review in Evaluating the Risks of Human Genetic Variation Research," American Journal of Human Genetics, 64 (1999): 1719-1727; M.W. Foster, D. Bersten, and T.H. Carter, "A Model Agreement for Genetic Research in Socially Identifiable Populations," American Journal of Human Genetics, 63 (1998): 696-702; M.W. Foster, A.J. Eisenbraun, and T.H. Carter, "Genetic Screening of Targeted Subpopulations: The Role of Communal Discourse in Evaluating Sociocultural Implications," Genetic Testing, 1 (1997/98.): 269-274; H.T. Greely, "The Control of Genetic Research: Involving the 'Groups Between,'" Houston Law Review, 33 (1997): 1397-1430; North American Regional Committee of the Human Genome Diversity Project, "Proposed Model Ethical Protocol for Collecting DNA Samples," Houston Law Review, 33 (1997): 1431-1473; Human Genome Diversity Committee of the Human Genome Organisation, The Human Genome Diversity Project: Summary Document (London: Human Genome Organisation, 1994).
21. M.W. Foster, R.R. Sharp, W.L. Freeman, M. Chino, D. Bernsten, and T.H. Carter, "The Role of Community Review in Evaluating the Risks of Human Genetic Variation Research," American Journal of Human Genetics, 64 (1999): 1719-1727; M.W. Foster, D. Bersten, and T.H. Carter, "A Model Agreement for Genetic Research in Socially Identifiable Populations," American Journal of Human Genetics, 63 (1998): 696-702; M.W. Foster, A.J. Eisenbraun, and T.H. Carter, "Genetic Screening of Targeted Subpopulations: The Role of Communal Discourse in Evaluating Sociocultural Implications," Genetic Testing, 1 (1997/98.): 269-274; H.T. Greely, "The Control of Genetic Research: Involving the 'Groups Between,'" Houston Law Review, 33 (1997): 1397-1430; North American Regional Committee of the Human Genome Diversity Project, "Proposed Model Ethical Protocol for Collecting DNA Samples," Houston Law Review, 33 (1997): 1431-1473; Human Genome Diversity Committee of the Human Genome Organisation, The Human Genome Diversity Project: Summary Document (London: Human Genome Organisation, 1994).
22. M.W. Foster, R.R. Sharp, W.L. Freeman, M. Chino, D. Bernsten, and T.H. Carter, "The Role of Community Review in Evaluating the Risks of Human Genetic Variation Research," American Journal of Human Genetics, 64 (1999): 1719-1727; M.W. Foster, D. Bersten, and T.H. Carter, "A Model Agreement for Genetic Research in Socially Identifiable Populations," American Journal of Human Genetics, 63 (1998): 696-702; M.W. Foster, A.J. Eisenbraun, and T.H. Carter, "Genetic Screening of Targeted Subpopulations: The Role of Communal Discourse in Evaluating Sociocultural Implications," Genetic Testing, 1 (1997/98.): 269-274; H.T. Greely, "The Control of Genetic Research: Involving the 'Groups Between,'" Houston Law Review, 33 (1997): 1397-1430; North American Regional Committee of the Human Genome Diversity Project, "Proposed Model Ethical Protocol for Collecting DNA Samples," Houston Law Review, 33 (1997): 1431-1473; Human Genome Diversity Committee of the Human Genome Organisation, The Human Genome Diversity Project: Summary Document (London: Human Genome Organisation, 1994).
23. M.W. Foster, R.R. Sharp, W.L. Freeman, M. Chino, D. Bernsten, and T.H. Carter, "The Role of Community Review in Evaluating the Risks of Human Genetic Variation Research," American Journal of Human Genetics, 64 (1999): 1719-1727; M.W. Foster, D. Bersten, and T.H. Carter, "A Model Agreement for Genetic Research in Socially Identifiable Populations," American Journal of Human Genetics, 63 (1998): 696-702; M.W. Foster, A.J. Eisenbraun, and T.H. Carter, "Genetic Screening of Targeted Subpopulations: The Role of Communal Discourse in Evaluating Sociocultural Implications," Genetic Testing, 1 (1997/98.): 269-274; H.T. Greely, "The Control of Genetic Research: Involving the 'Groups Between,'" Houston Law Review, 33 (1997): 1397-1430; North American Regional Committee of the Human Genome Diversity Project, "Proposed Model Ethical Protocol for Collecting DNA Samples," Houston Law Review, 33 (1997): 1431-1473; Human Genome Diversity Committee of the Human Genome Organisation, The Human Genome Diversity Project: Summary Document (London: Human Genome Organisation, 1994).
24. M.W. Foster, R.R. Sharp, W.L. Freeman, M. Chino, D. Bernsten, and T.H. Carter, "The Role of Community Review in Evaluating the Risks of Human Genetic Variation Research," American Journal of Human Genetics, 64 (1999): 1719-1727; M.W. Foster, D. Bersten, and T.H. Carter, "A Model Agreement for Genetic Research in Socially Identifiable Populations," American Journal of Human Genetics, 63 (1998): 696-702; M.W. Foster, A.J. Eisenbraun, and T.H. Carter, "Genetic Screening of Targeted Subpopulations: The Role of Communal Discourse in Evaluating Sociocultural Implications," Genetic Testing, 1 (1997/98.): 269-274; H.T. Greely, "The Control of Genetic Research: Involving the 'Groups Between,'" Houston Law Review, 33 (1997): 1397-1430; North American Regional Committee of the Human Genome Diversity Project, "Proposed Model Ethical Protocol for Collecting DNA Samples," Houston Law Review, 33 (1997): 1431-1473; Human Genome Diversity Committee of the Human Genome Organisation, The Human Genome Diversity Project: Summary Document (London: Human Genome Organisation, 1994).
25. Human Genome Diversity Committee of the Human Genome Organisation, supra note 8.
26. National Bioethics Advisory Commission, Research Involving Human Biological Materials: Ethical Issues and Policy Guidance (Rockville, MD: U.S. Government Printing Office, 1999).
27. E.T. Juengst, "Groups as Gatekeepers to Genomic Research: Conceptually Confusing, Morally Hazardous, and Practically Useless," Kennedy Institute of Ethics Journal, 8 (1998): 183-200.
28. P.R. Reilly, "Rethinking Risks to Human Subjects in Genetic Research, "American Journal of Human Genetics, 63 (1998): 682-685.
29. Juengst, supra note 11.
30. Reilly, supra note 12.
31. National Research Council, supra note5.
32. P.R. Reilly, and D.C. Page, "We're Off to See the Genome," Nature Genetics, 20 (1998): 15-17.
33. Reilly, supra note 12.
34. Juengst, supra note 11; North American Regional Committee of the Human Genome Diversity Project, supra note 9.
35. W.L. Freeman, "The Role of Community in Research with Stored Tissue Samples, "in R. F. Weir, ed., Stored Tissue Samples: Ethical, Legal, and Public Policy Implications (Iowa City: University of Iowa Press, 1998): 267-294.
36. Foster, Sharp, et al., supra note 8.
37. Foster, Eisenbraun, et al., supra note 8.
38. We prefer the term "review" because it has both evaluative and non-evaluative associations. Depending on the context, to "review" a proposal can mean to survey the issues it presents or evaluate its merits. Hence, community review can be seen as including both formal evaluations (e.g. group consent), as well as other methods of surveying potential risks to socially identifiable groups that stop short of comprehensive evaluations (e.g. community consultation).
39. A "study population" is a collection of individuals defined by researchers. We use the term "community" to describe a set of persons who share a set of common interests and who interact with each other socially (perhaps only indirectly). Thus, most study populations are comprised of many communities.
40. In this paper we consider the role of community review in relation to the study of genetic differences between populations. This includes many types of disease-susceptibility research, as well as anthropologic research that makes use of genetic differences to track the movement of populations over time. Nonetheless, much of what is said about community review and its role in identifying collective research-related risks also applies to other types of research. Many types of behavioral research, sociological research, and research on stigmatizing conditions that appear to be more prevalent in some populations and not others, implicate the same considerations discussed here in connection with genetic research. Arguably, whenever researchers attempt to make scientific claims about socially defined groups, that research can present collective risks to members of those groups.
41. National Bioethics Advisory Commission, supra note 10.
42. Foster, Bersten, et al., supra note 8.
43. Foster, Sharp, et al., supra note 8; Greely, supra note 8; and Freeman, supra note 19.
44. M.W. Foster and R.R. Sharp, "Genetic Research and Culturally Specific Risks: One Size Does Not Fit All," Trends in Genetics, 16 (2000): 93-95.
45. Canada Tri-Council Working Group on Ethics, Code of Conduct for Research Involving Humans, (Ottawa: Minister of Supply and Services, 1997).
46. North American Regional Committee of the Human Genome Diversity Project, supra note 8.
47. Foster, Bersten, et al., supra note 8.
48. American Indian Law Center, Model Tribal Research Code, 2nd edition, (Albuquerque, NM: American Indian Law Center, 1994); A. Cornwall, and R. Jewkes, "What is Participatory Research?" Social Science and Medicine, 41 (1995): 1667-1676; J. Hatch, N. Moss, A. Saran, L. Presley-Cantrell, and C. Mallory, "Community Research: Partnership in Black Communities," American Journal of Preventive Medicine, 9 (1993): 27-31; A.C. Macaulay, L. Commanda, W.L. Freeman, N. Gibson, M.L. McCabe, C.M. Robbins, and P.L. Twohig, "Responsible Research with Communities: A Review of Participatory Research in Primary Care," British Medical Journal (in press); A.C. Macaulay, T. Delormier, A.M. McComber, E.J. Cross, L.P. Potvin, G. Paradis, et al., "Participatory Research with Native Community of Kahnawake Creates Innovative Code of Research Ethics," Canadian Journal of Public Health, 89 (1998): 105-108; I. Maddocks, "Ethics in Aboriginal Research: a Model for Minorities or for All?" Medical Journal of Australia, 157 (1992): 553-555; C. Weijer, "Protecting Communities in Research: Philosophical and Pragmatic Challenges," Cambridge Quarterly of Healthcare Ethics, 8 (1999): 501-513.
49. American Indian Law Center, Model Tribal Research Code, 2nd edition, (Albuquerque, NM: American Indian Law Center, 1994); A. Cornwall, and R. Jewkes, "What is Participatory Research?" Social Science and Medicine, 41 (1995): 1667-1676; J. Hatch, N. Moss, A. Saran, L. Presley-Cantrell, and C. Mallory, "Community Research: Partnership in Black Communities," American Journal of Preventive Medicine, 9 (1993): 27-31; A.C. Macaulay, L. Commanda, W.L. Freeman, N. Gibson, M.L. McCabe, C.M. Robbins, and P.L. Twohig, "Responsible Research with Communities: A Review of Participatory Research in Primary Care," British Medical Journal (in press); A.C. Macaulay, T. Delormier, A.M. McComber, E.J. Cross, L.P. Potvin, G. Paradis, et al., "Participatory Research with Native Community of Kahnawake Creates Innovative Code of Research Ethics," Canadian Journal of Public Health, 89 (1998): 105-108; I. Maddocks, "Ethics in Aboriginal Research: a Model for Minorities or for All?" Medical Journal of Australia, 157 (1992): 553-555; C. Weijer, "Protecting Communities in Research: Philosophical and Pragmatic Challenges," Cambridge Quarterly of Healthcare Ethics, 8 (1999): 501-513.
50. American Indian Law Center, Model Tribal Research Code, 2nd edition, (Albuquerque, NM: American Indian Law Center, 1994); A. Cornwall, and R. Jewkes, "What is Participatory Research?" Social Science and Medicine, 41 (1995): 1667-1676; J. Hatch, N. Moss, A. Saran, L. Presley-Cantrell, and C. Mallory, "Community Research: Partnership in Black Communities," American Journal of Preventive Medicine, 9 (1993): 27-31; A.C. Macaulay, L. Commanda, W.L. Freeman, N. Gibson, M.L. McCabe, C.M. Robbins, and P.L. Twohig, "Responsible Research with Communities: A Review of Participatory Research in Primary Care," British Medical Journal (in press); A.C. Macaulay, T. Delormier, A.M. McComber, E.J. Cross, L.P. Potvin, G. Paradis, et al., "Participatory Research with Native Community of Kahnawake Creates Innovative Code of Research Ethics," Canadian Journal of Public Health, 89 (1998): 105-108; I. Maddocks, "Ethics in Aboriginal Research: a Model for Minorities or for All?" Medical Journal of Australia, 157 (1992): 553-555; C. Weijer, "Protecting Communities in Research: Philosophical and Pragmatic Challenges," Cambridge Quarterly of Healthcare Ethics, 8 (1999): 501-513.
51. American Indian Law Center, Model Tribal Research Code, 2nd edition, (Albuquerque, NM: American Indian Law Center, 1994); A. Cornwall, and R. Jewkes, "What is Participatory Research?" Social Science and Medicine, 41 (1995): 1667-1676; J. Hatch, N. Moss, A. Saran, L. Presley-Cantrell, and C. Mallory, "Community Research: Partnership in Black Communities," American Journal of Preventive Medicine, 9 (1993): 27-31; A.C. Macaulay, L. Commanda, W.L. Freeman, N. Gibson, M.L. McCabe, C.M. Robbins, and P.L. Twohig, "Responsible Research with Communities: A Review of Participatory Research in Primary Care," British Medical Journal (in press); A.C. Macaulay, T. Delormier, A.M. McComber, E.J. Cross, L.P. Potvin, G. Paradis, et al., "Participatory Research with Native Community of Kahnawake Creates Innovative Code of Research Ethics," Canadian Journal of Public Health, 89 (1998): 105-108; I. Maddocks, "Ethics in Aboriginal Research: a Model for Minorities or for All?" Medical Journal of Australia, 157 (1992): 553-555; C. Weijer, "Protecting Communities in Research: Philosophical and Pragmatic Challenges," Cambridge Quarterly of Healthcare Ethics, 8 (1999): 501-513.
52. American Indian Law Center, Model Tribal Research Code, 2nd edition, (Albuquerque, NM: American Indian Law Center, 1994); A. Cornwall, and R. Jewkes, "What is Participatory Research?" Social Science and Medicine, 41 (1995): 1667-1676; J. Hatch, N. Moss, A. Saran, L. Presley-Cantrell, and C. Mallory, "Community Research: Partnership in Black Communities," American Journal of Preventive Medicine, 9 (1993): 27-31; A.C. Macaulay, L. Commanda, W.L. Freeman, N. Gibson, M.L. McCabe, C.M. Robbins, and P.L. Twohig, "Responsible Research with Communities: A Review of Participatory Research in Primary Care," British Medical Journal (in press); A.C. Macaulay, T. Delormier, A.M. McComber, E.J. Cross, L.P. Potvin, G. Paradis, et al., "Participatory Research with Native Community of Kahnawake Creates Innovative Code of Research Ethics," Canadian Journal of Public Health, 89 (1998): 105-108; I. Maddocks, "Ethics in Aboriginal Research: a Model for Minorities or for All?" Medical Journal of Australia, 157 (1992): 553-555; C. Weijer, "Protecting Communities in Research: Philosophical and Pragmatic Challenges," Cambridge Quarterly of Healthcare Ethics, 8 (1999): 501-513.
53. American Indian Law Center, Model Tribal Research Code, 2nd edition, (Albuquerque, NM: American Indian Law Center, 1994); A. Cornwall, and R. Jewkes, "What is Participatory Research?" Social Science and Medicine, 41 (1995): 1667-1676; J. Hatch, N. Moss, A. Saran, L. Presley-Cantrell, and C. Mallory, "Community Research: Partnership in Black Communities," American Journal of Preventive Medicine, 9 (1993): 27-31; A.C. Macaulay, L. Commanda, W.L. Freeman, N. Gibson, M.L. McCabe, C.M. Robbins, and P.L. Twohig, "Responsible Research with Communities: A Review of Participatory Research in Primary Care," British Medical Journal (in press); A.C. Macaulay, T. Delormier, A.M. McComber, E.J. Cross, L.P. Potvin, G. Paradis, et al., "Participatory Research with Native Community of Kahnawake Creates Innovative Code of Research Ethics," Canadian Journal of Public Health, 89 (1998): 105-108; I. Maddocks, "Ethics in Aboriginal Research: a Model for Minorities or for All?" Medical Journal of Australia, 157 (1992): 553-555; C. Weijer, "Protecting Communities in Research: Philosophical and Pragmatic Challenges," Cambridge Quarterly of Healthcare Ethics, 8 (1999): 501-513.
54. American Indian Law Center, Model Tribal Research Code, 2nd edition, (Albuquerque, NM: American Indian Law Center, 1994); A. Cornwall, and R. Jewkes, "What is Participatory Research?" Social Science and Medicine, 41 (1995): 1667-1676; J. Hatch, N. Moss, A. Saran, L. Presley-Cantrell, and C. Mallory, "Community Research: Partnership in Black Communities," American Journal of Preventive Medicine, 9 (1993): 27-31; A.C. Macaulay, L. Commanda, W.L. Freeman, N. Gibson, M.L. McCabe, C.M. Robbins, and P.L. Twohig, "Responsible Research with Communities: A Review of Participatory Research in Primary Care," British Medical Journal (in press); A.C. Macaulay, T. Delormier, A.M. McComber, E.J. Cross, L.P. Potvin, G. Paradis, et al., "Participatory Research with Native Community of Kahnawake Creates Innovative Code of Research Ethics," Canadian Journal of Public Health, 89 (1998): 105-108; I. Maddocks, "Ethics in Aboriginal Research: a Model for Minorities or for All?" Medical Journal of Australia, 157 (1992): 553-555; C. Weijer, "Protecting Communities in Research: Philosophical and Pragmatic Challenges," Cambridge Quarterly of Healthcare Ethics, 8 (1999): 501-513.
55. National Research Council, supra note 5; North American Regional Committee of the Human Genome Diversity Project, supra note 8.
56. For example, some Institutional Review Boards have considerable experience identifying and assessing external risks to minority populations.
57. Foster, Sharp, et al., supra note 8.
58. R.A. Grounds, "The Yuchi Community and the Human Genome Diversity Project," Cultural Survival Quarterly (Summer 1996): 64-68.
59. Reilly, supra note 12; Reilly and Page, supra note16.
60. Reilly, supra note 12.
61. L.S. Parker, "Bioethics for Human Geneticists: Models for Reasoning and Methods for Teaching," American Journal of Human Genetics, 54 (1994): 137-147.
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