Groups, communities, and contested identities in genetic research

Hasting Center Report

Volumn 30, Issue 6, 2000, Pages 38-45

  Davis, Dena S ^a  

^a NONE

Author keywords

[No Author keywords available]

Indexed keywords

ATTITUDE TO HEALTH; BIOMEDICAL AND BEHAVIORAL RESEARCH; CONSUMER; CULTURAL FACTOR; GENETICS; GENETICS AND REPRODUCTION; HUMAN; INFORMED CONSENT; MEDICAL ETHICS; MEDICAL GENETICS; MINORITY GROUP; PATIENT ADVOCACY; PSYCHOLOGICAL ASPECT; RESEARCH; REVIEW; SOCIAL BEHAVIOR; SOCIAL PSYCHOLOGY;

BIOMEDICAL AND BEHAVIORAL RESEARCH; GENETICS AND REPRODUCTION;

ATTITUDE TO HEALTH; CONSUMER PARTICIPATION; CULTURAL CHARACTERISTICS; ETHICS, MEDICAL; GENETIC RESEARCH; GENETICS, MEDICAL; HUMANS; INFORMED CONSENT; MINORITY GROUPS; PATIENT ADVOCACY; RESEARCH; SOCIAL IDENTIFICATION; SOCIAL VALUES; THIRD-PARTY CONSENT;

EID: 0034329408     PISSN: 00930334     EISSN: None     Source Type: Journal    
DOI: 10.2307/3528452     Document Type: Article

References (45)

1. R. Veatch, The Patient as Partner: A Theory of Human-Experimentation Ethics (Bloomington: Indiana University Press, 1987).
2. F. Butterfield, "Indians Are Crime Victims at Rate Above U.S. Average," New York Times, 15 February 1999.
3. M.W. Foster, A.J. Eisenbraun, and T.H. Carter, "Communal Discourse as a Supplement to Informed Consent for Genetic Research," Nature Genetics 17 (1997): 277-79;
4. North American Regional Committee of the Human Genome Diversity Project, "Proposed Model Ethical Protocol for Collecting DNA Samples," Houston Law Review 33, no. 5 (1997): 1431-73.
5. C.V. Hayes, "Genetic Testing for Huntingtons Disease - A Family Issue," NEJM 327 (1992): 1449-51.
6. Interview on National Public Radio, "Morning Edition," 6 May 1999.
7. H.T. Greely, "The Control of Genetic Research: Involving the 'Groups Between,'" Houston Law Review 33 (1997): 1397-430.
8. J. Karlawish, "Building Right Reason in the Republic of Science: Why We Must Include Community Values in the Design and Conduct of Clinical Research," PennBioethics 5, no. 2 (1998): 1.
9. J. Featherstone, "It Just Ain't Fair: The Ethics of Health Care for African Americans," in It Just Ain't Fair. The Ethics of Health Care for African Americans, ed. Dula and Goering (Westport, Conn.: Praeger, 1994), p. 262-63. I am indebted to Charlene A. Galarneau for this quotation.
10. A.O. Martin et al., "Genetics of Neoplasia in a Human Isolate," Genetic and Environmental Factors in Experimental and Human Cancer, ed. H.V. Gelboin et al., (Tokyo: Science Society Press, 1980), pp. 291-302.
11. A.O. Martin, Presentation at "Anthropology, Genetic Diversity, and Ethics Workshop," University of Wisconsin at Milwaukee, 12 February 1999.
12. C. Royale, Panelist, "Anthropology, Genetic Diversity, and Ethics Workshop," University of Wisconsin at Milwaukee, 12 February 1999.
13. See ref. 6, Greely, "The Control of Genetic Research," p. 1412.
14. C. Grady, The Search for an AIDS Vaccine: Ethical Issues in the Development and Testing of a Preventive HIV Vaccine (Bloomington: Indiana University Press, 1995), p. 78.
15. G. Livshits, R.R. Sokal, and E. Kobyliansky, "Genetic Affinities of Jewish Populations," American Journal of Human Genetics 49 (1991): 131-46.
16. B.K. Rothman, Genetic Maps and Human Imaginations: The Limits of Science in Understanding Who We Are (New York: W.W. Norton & Company, 1998), p. 124.
17. B.P. Tucker, "Deaf Culture, Cochlear Implants, and Elective Disability," Hastings Center Report 28, no. 4 (1998): 6-14;
18. D.S. Davis, "Genetic Dilemmas and the Child's Right to an Open Future," Hastings Center Report 27, no. 2 (1997): 7-15.
19. E.S. Cohn et al., "Clinical Studies of Families with Hearing Loss Attributable to Mutations in the connexin 26 Gene (GJB2/DFNB1)," Pediatrics 103 (1999): 546-674.
20. A. Solomon, "Defiantly Deaf," New York Times Magazine, 28 August 1994, pp. 40-68.
21. A. Middleton, J. Hewison, and R.F. Mueller, "Attitudes of Deaf Adults toward Genetic Testing for Hereditary Deafness," American Journal of Human Genetics 63 (1998): 1175-80.
22. A.E. Brusky, "Making Decisions for Deaf Children regarding Cochlear Implants: The Legal Ramifications of Recognizing Deafness as a Culture Rather than a Disability," Wisconsin Law Review (1995): 235-70, at 242.
23. See ref. 19, Middleton, "Attitudes of Deaf Adults."
24. R.A. Crouch, "Letting the Deaf Be Deaf: Reconsidering the Use of Cochlear Implants in Prelingually Deaf Children," Hastings Center Report 27, no. 4 (1997): 14-21, at 15.
25. J.R. Harris, The Nurture Assumption (Simon & Schuster Trade Paperbacks 1998), p. 193.
26. NIDCD Working Group Considerations for Developing and Implementing Genetic Diagnostic Tests for Hereditary Hearing Impairment and Other Communication Disorders, Rockville, Md., 8 December 1998, p. 2. Available at http://www.nih.gov/nidcd/ genetic.htm.
27. See ref. 19, Middleton, "Attitudes of Deaf Adults";
28. B.P. Tucker, "Deaf Culture, Cochlear Implants, and Elective Disability," Hastings Center Report 28, no. 4 (1998): 6-14.
29. I owe this question to Ingrid Burger.
30. F.C. Dukepoo, "Commentary on 'Scientific Limitations and Ethical Ramifications of a Non-Representative Human Genome Project: African American Responses,' An American Indian Perspective." (Specifically Appendix A, "Key Points for a Resolution Opposing the Human Genome Diversity Project," and Appendix B, "The Heart of the People Declaration.") Science and Engineering Ethics 4, no. 2 (1998): 171-80.
31. See ref. 3, "Proposed Model," p. 1442-47.
32. See ref. 2, Butterfield, "Indians Are Crime Victims."
33. E. Juengst, "Group Identity and Human Diversity: Keeping Biology Straight from Culture," American Journal of Human Genetics 63 (1998): 673-77.
34. "Genetic Diseases and the Jewish Community: A Clarification," Congress Monthly, July-August 1998: 3-7.
35. See ref. 13, Grady, The Search for an AIDS Vaccine," pp. 84-85.
36. M.C. Nussbaum, Women, Culture, and Development: A Study of Human Capabilities, ed. M.C. Nussbaum and J. Glover (Oxford: Clarendon Press, 1995), p. 1.
37. However, as Henry Greely has noted, prior acceptance of the project by recognized community leaders may well have a coercive effect that can "taint" the voluntariness of individual consents. (Remarks at "Anthropology, Genetic Diversity, and Ethics Workshop," University of Wisconsin at Milwaukee, 12 February 1999).
38. C. Weijer, "The Need to Protect the Community in Research," Cambridge Quarterly of Healthcare Ethics 8 (1999): 501-13.
39. S.M. Okin, Is Multiculturism Bad for Women? (Princeton, N.J.: Princeton University Press, 1999), p. 10.
40. See ref. 16, Tucker, "Deaf Culture," p. 9.
41. See ref. 10, Martin, workshop presentation.
42. See ref. 36, Okin, Is Multiculturism Bad for Women?, pp. 22-23.
43. See ref. 36, Weijer, "The Need to Protect the Community in Research."
44. Y. Tamir, "Siding with the Underdogs," in Is Multiculturalism Bad for Women? ed. S.M. Okin (Princeton, N.J.: Princeton University Press, 1999), 47-52.
45. J.F. Childress and J.C. Fletcher, "Respect for Autonomy," Hastings Center Report 24, no. 3 (1994): 34-35 at 35.