Ethical analysis of research partnerships with communities

Kennedy Institute of Ethics Journal

Volumn 18, Issue 1, 2008, Pages 57-85

  Wallwork, Ernest ^a  

^a NONE

Author keywords

[No Author keywords available]

Indexed keywords

BIOETHICS; CONSUMER; ETHICS; HUMAN; HUMAN RELATION; PERSONAL AUTONOMY; PUBLIC RELATIONS; RESEARCH ETHICS; REVIEW; SOCIAL JUSTICE; SOCIAL PSYCHOLOGY; UNITED STATES;

BIOETHICAL ISSUES; COMMUNITY-INSTITUTIONAL RELATIONS; CONSUMER PARTICIPATION; ETHICAL ANALYSIS; ETHICS, RESEARCH; HUMANS; PERSONAL AUTONOMY; RESEARCHER-SUBJECT RELATIONS; SOCIAL JUSTICE; SOCIAL VALUES; UNITED STATES;

EID: 44949166591     PISSN: 10546863     EISSN: None     Source Type: Journal    
DOI: None     Document Type: Review

References (43)

1. Appiah, Kwame Anthony. 2005. The Ethics of Identity. Princeton, NJ: Princeton University Press.
2. th ed. New York: Oxford University Press.
3. Bellah, Robert N.; Madsen, Richard; Sullivan, William M.; et al. 1985. Habits of the Heart: Individualism and Commitment in American Life. Berkeley: University of California Press.
4. Boverman, Max, and Fletcher, John C. 1983. The Evolution of the Role of an Applied Bioethicist in a Research Hospital. In Research Ethics, ed. Kare Berg and Knut Erik Tranoy, pp.131-58. New York: Alan R. Liss, Inc.
5. Banting, Keith, and Kymlicka, Will, eds. 2006. Multiculturalism and the Welfare State. New York and London: Oxford University Press.
6. Brugge, Doug, and Hynes, Patricia H. 2005. Science with the People. In Community Research in Environmental Health Studies in Science, Advocacy and Ethics, ed. Doug Brugge and Patricia H. Hynes. Aldershot, U.K.: Ashgate Publishing, Ltd.
7. Caballero, Benjamin. 2002. Ethical Issues for Collaborative Research in Developing Countries. American Journal of Clinical Nutrition 76: 717-20. Available at http://www.ajcn.org/cgi/content/full/76/4/717, accessed 28 March 2008.
8. Cornwall, Andrea, and Jewkes, Rachel. 1995. What is Participatory Research? Social Science Medicine 41: 1667-76.
9. Emanuel, Ezekiel J. 1991. The Ends of Human Life: Medical Ethics in a Liberal Polity. Cambridge, MA: Harvard University Press.
10. Erikson, Erik. 1964. Insight and Responsibility. New York: W. W. Norton.
11. Foster, M. W.; Sharp, R. R.; Freeman, W. L.; et al. 1999. The Role of Community Review in Evaluating the Risks of Human Genetic Variation Research. American Journal of Human Genetics 64: 1719-1727.
12. Freeman, William L. 1998. The Role of Community in Research with Stored Tissue Samples. In Stored Tissue Samples: Ethical, Legal, and Public Policy Implications., ed. Robert F. Weir, pp. 267-301. Iowa City: University of Iowa Press.
13. Green, Lawrence W.; George, M. Anne; Daniel, Mark; et al. 1995. Study of Participatory Research in Health Promotion. Ottawa: Royal Society of Canada.
14. Habermas, Jurgen. 1990. Moral Consciousness and Communicative Action. Cambridge, MA: MIT Press.
15. Israel, Barbara A.; Schulz, Amy J.; Parker, Edith A.; and Becker, Adam B. 1998. Review of Community-Based Research: Assessing Partnership Approaches to Improve Public Health. Annual Review of Public Health 19: 173-202.
16. Juengst, Eric T 1998. Groups as Gatekeepers to Genomic Research: Conceptually Confusing, Morally Hazardous, and Practically Useless. Kennedy Institute of Ethics Journal 8: 183-200.
17. Krimsky, Sheldon. 2001. Some Ethical Considerations for Health Research in Sensitive Communities. In Compilation on Environmental Health Research Ethics Issues with Native Communities, ed. Dianne Quigley. Unpublished manuscript funded by a grant from the National Institutes of Health, National Institute of Allergies and Infectious Disease Grant Program for Research Ethics-T15A149650-01.
18. Levinas, Emmanuel. 1969. Totality and Infinity. Pittsburgh, PA: Duquesne University Press.
19. 1998. Otherwise than Being or Beyond Essence. Pittsburgh, PA: Duquesne University Press.
20. Levine, Robert J. 1982. Validity of Consent Procedures in Technologically Developing Countries. In Human Experimentation and Medical Ethics: Proceedings of the XV CIOMS Round Table Conference, ed. Z. Bankowski and N. Howard-Jones, pp. 16-30. Geneva: CIOMS.
21. MacQueen, Kathleen M.; McLellan, Eleanor; Metzger, David S.; et al. 2001. What is Community: An Evidence-Based Definition for Participatory Public Health. American Journal of Public Health 91: 1929-38.
22. Macklin, Ruth. 2001. After Helsinki: Unresolved Issues in International Research. Kennedy Institute of Ethics Journal 11: 17-36.
23. National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research. 1979. The Belmont Report: Ethical Principles and Guidelines for the Protection of Human Subjects of Research, pp. 1-8. OPRR Reports. Bethesda, MD: National Institutes of Health.
24. NBAC. National Bioethics Advisory Commission. 1999. Research Involving Human Biological Materials: Ethical Issues and Policy Guidance. Volume 1: Report and Recommendations. Rockville, MD: NBAC. Available at http://bioethics.georgetown.edu/nbac/pubs.html, accessed 28 March 2008.
25. 2001. Ethical Policy Issues in International Research: Clinical Trails in Developing Countries. Volume 1: Report and Recommendations of the National Bioethics Advisory Commission. Bethesda, MD: NBAC. Available at http://bioethics.georgetown.edu/nbac/pubs.html, accessed 28 March 2008.
26. O'Fallon, Liam R., and Dearry, Alien. 2002. Community-Based Participatory Research as a Tool to Advance Environmental Health Services. Environmental Health Perspectives 110 (Suppl. 2): 155-59.
27. Pogge, Thomas. 2006. Do Rawls's Two Theories of Justice Fit Together? In Rawls's Law of Peoples, ed. Rex Martin and David Reidy, pp. 206-225. London: Blackwell.
28. Quigley, Dianne. 2006. A Review of Improved Ethical Practices in Environmental and Public Health Research: Case Examples from Native Communities. Health Education and Behavior 33: 30-147.
29. Schell, Lawrence M., and Tarbell, Alice M. 1998. A Partnership Study of PCBs and the Health of Mohawk Youth: Lessons from Our past and Guidelines for Our Future. Environmental Health Perspectives Supplements 106 (Suppl. 3): 833-40.
30. Sharp, Richard R., and Foster Morris W. 2000. Involving Study Populations in the Review of Genetic Research. Journal of Law, Medicine and Ethics 28: 41-51.
31. 2002. Community Involvement in Ethical Review of Genetic Research: Lessons from American Indian and Alaska Native Populations. Environmental Health Perspectives 110 (Supplement 2): 145-48.
32. Silka, Linda. 2001. Rituals and Research Ethics: Using One Community's Experience to Reconsider the Ways that Communities and Researchers Build Sustainable Partnerships. In Compilation on Environmental Health Research Ethics Issues with Native Communities, ed. Dianne Quigley. Unpublished manuscript funded by a grant from the National Institutes of Health, National Institute of Allergies and Infectious Disease Grant Program for Research Ethics-T15A149650-01.
33. Stout, Jeffrey. 1988. Ethics after Babel: The Languages of Morals and Their Discontents. Boston, MA: Beacon Press.
34. Strauss, Ronald, and Sohini, Sengupta. 2001. The Role of Community Advisory Boards: Involving Communities in the Informed Consent Process. American Journal of Public Health 91: 1938-43.
35. Struewing, Jeffery P.; Hartge, Patricia; Wacholder, Sholom.; et al. 1997. The Risk of Cancer Associated with Specific Mutations of BRCA1 and BRCA1 among Ashkenazi Jews. New England Journal of Medicine 336: 1401-8.
36. Suk, William A.; Avakian, Maureen D.; Carpenter, David; et al. 2004. Environmental Health Perspectives 112: 113-20.
37. Veatch, Robert M. 1987. The Patient as Partner: A Theory of Human-Experimentation Ethics. Bloomington: Indiana University Press.
38. Wallwork, Ernest. 1990. Erik Erikson: Psychosocial Resources for Faith. In Critical Issues in Modern Religion, 2d ed., ed. Roger Johnson and Ernest Wallwork, pp. 178-212. Englewood Cliffs, NJ: Prentice Hall.
39. 2003. Failed Community Representation: Does the Process Inhibit Full IRB Participation by Community Representatives? Protecting Human Subjects 9 (Fall): 4, 14. Available at http://humansubjects.energy.gov/doe_resources/ newsletter/fall03.pdf, accessed 28 March 2008.
40. Weijer, Charles, and Emanuel, Ezekiel J. 2000. Protecting Communities in Biomedical Research. Science 289: 1142-44.
41. Weijer, C., and Miller, P. B. 2004. Protecting Communities in Pharmacogenetic and Pharmacogenomic Research. Pharmacogenomics Journal 4: 9-16.
42. WMA. World Medical Association. 2000. Declaration of Helsinki. Available at http://www.wma.net/e/policy/b3.htm, accessed 28 March 2008.
43. Zakus, J., and Lysack, C.. 1998. Revisiting Community Participation. Health Policy and Planning 13 (1): 1-12.