Defining the Subject of Consent in DNA Research
Rent the article at a discountRent now
* Final gross prices may vary according to local VAT.Get Access
The advent of population-specific genomic research has prompted calls for invention of informed consent protocols that would treat entire social groups as research subjects as well as endow such groups with authority as agents of consent. Critics of such an unconventional ethical norm of “group consent” fear the rhetorical effects of approaching social groups with offers to participate in dialogues about informed consent. Addressing a specific population as the collective subject of genomic research, on this logic, adds currency to the potentially dangerous public opinion that such a group is bound by genetic ties. The paper considers the problem of group and individual identity within the rhetorical dynamics of the discourse and politics of consent.
- The big test. (2000 July 10 & 17). The New Republic, 9.
- Blakey, M. (1998a). The African burial ground: Continued research and preservation or “business as usual”? Newsletter of the African Burial Ground and Five Points Archaeological Projects Update (Fall), 1–11
- Blakey,M. (1998b, November). Update on the analysis of the ancestral remains at Howard University. Paper presented at the African Burial Ground Project 1998 Educators Symposium, New York, NY.
- Brown, E. L. (1993). Historic site offers new directions. Newsletter of the African Burial Ground and Five Points Archaeological Projects Update (Fall), 1–3.
- Clinton, W. J. (2000). Remarks by the President, Prime Minister Tony Blair of England, Dr. Francis
- Collins, Director of the National Human Genome Research Institute, and Dr. Craig Venter, President and Chief Scientific Officer, Celera Genomics Corporation, on the completion of the first survey of the entire Human Genome Project. The White House, Office of the Press Secretary (June 26). Online. Available at: <http://www.pub.whitehouse.gov>.
- Cook, K. (1993, March 27). Skeletons haunt American race debate. The Weekly Journal, 56, 1.
- Devieux, M. A., & Mathis, R. A. (1996). Issues in the field: Notes on oral history, anthropology, and African American culture. Newsletter of the African Burial Ground andFivePoints Archaeological Projects Update (Fall), 9–15.
- Duster, T. (1990). Backdoor to eugenics. New York: Routledge.
- Faden, R., & Beauchamp, T. (1986). A history and theory of informed consent. New York: Oxford University Press.
- Foster, M. W., Bersten, D., & Carter, T. (1998). A model agreement for genetic research in socially identifiable populations. American Journal of Human Genetics, 63, 696–702. CrossRef
- Foster, M.W., Eisenbraun, A.J., & Carter, T. (1997). Communal discourse as a supplement to informed consent for genetic research. Nature Genetics, 17, 277–279.
- Foster, M.W., & Sharp, R. R. (2000). Genetic research and culturally specific risks: One size does not fit all. Trends in Genetics, 16, 93–94. CrossRef
- Foster, M.W., Sharp, R. R., Freeman, W.L., Chino, M., Bersten, M., & Carter, T.H. (1999). The role of community review in evaluating the risks of human genetic variation research. American Journal of Human Genetics, 64, 1719–1727. CrossRef
- Goldgar, D. E., & Reilly, P. R. (1995). A common BRCA1 mutation in the Ashkenazim. Nature Genetics, 11, 113–114. CrossRef
- Hansen, J., & McGowan, G. (1998). Breaking ground, breaking silence: The story of New York's African burial ground. New York: Henry Holt.
- Holtzman, N. A., & Marteau, T.M(2000).Will genetics revolutionize medicine? New England Journal of Medicine, 343, 141–144. CrossRef
- Hubbard, R., & Henifin, M. S. (1985). Genetic screening of prospective parents and of workers: Some scientific and social issues. International Journal of Health Services, 15, 231–251.
- Jackson, F. (1997a). Concerns and priorities in genetic studies: Insights from recent African American biohistory. Seton Hall Law Review, 27, 951–964.
- Jackson, F. (1997b). Assessing the Human Genome Project: An African American and bioanthropological critique. In E. Smith & W. Sapp (Eds.), Plain talk about the Human Genome Project (pp. 95–104). Tuskegee, AL: Tuskegee University.
- Juengst, E. T. (1998). Group identity and human diversity: Keeping biology straight from culture. American Journal of Human Genetics, 63, 637–677.
- Katz, J. (1984). The silent world of doctor and patient. New York: Free Press.
- Kaufmann, M. B. (1999). Genetic discrimination in theworkplace: An overviewof existing protections. Loyola University Chicago Law Journal 30, 393–437.
- Leventhal, D. (1997). The Human Genome Project: The road to our improved health or the new civil rights movement. Hofstra Labor and Employment Law Journal, 15, 207–245.
- Miller, P. S. (1998). Genetic discrimination in the workplace. Journal of Law, Medicine, and Ethics, 26, 189–194.
- Mitchell, G. R., & Happe, K. (forthcoming). Rhetorical dimensions of informed consent in genomic research. Rhetoric and Public Affairs.
- Murray, R., Jr. (1997). The ethics of predictive genetic screening: Are the benefits worth the risks? In E. Smith & W. Sapp (Eds.), Plain talk about the Human Genome Project (pp. 139–150.). Tuskegee, AL.: Tuskegee University.
- National Research Council. (1999). Human rights and human genetic variation research. In J. M. Mann, S. Gruskin, M. A. Grodin, & G. J. Annas (Eds.), Health and human rights: A reader (pp. 380–394). New York: Routledge.
- Paterson, Hon. D. (1999, January). Schomburg Center for Research in Black Culture address. Presented at the Friends of the African Burial Ground community hearing, Harlem, NY.
- Patrinos, A. (1997). The human genome project: What is it? In E. Smith & W. Sapp (Eds.), Plain talk about the Human Genome Project (pp. 1–10). Tuskegee, AL: Tuskegee University.
- Pearson, M. P. (1999). The archaeology of death and burial. College Station, TX: Texas A & M University Press.
- Rachinsky, T. L. (2000). Genetic testing: Toward a comprehensive policy to prevent genetic discrimination in the workplace. Journal of Labor and Employment Law, 2, 575–598.
- Richter, J. (1997). Taking the worker as you find him: The quandary of protecting the rights as well as the health of the worker with a genetic susceptibility to occupational disease. Maryland Journal of Contemporary Issues, 8, 189–236.
- Rothstein, M. A. (1997). Genetic secrets: A policy framework. In M.A. Rothstein (Ed.), Genetic secrets: Protecting privacy and confidentiality in the genetic era (pp. 451–495). New Haven: Yale University Press.
- Scientists probe African Burial Ground for answers to puzzles (1993, August 21). New York Amsterdam News, 84, 2.
- Struewing, J. P., Abeliovich, D., Peretz, T., Avishai, N., Kaback, M. M., Collins, F. S., & Brody, L. C. (1995). The carrier frequency of the BRCA1 185delAG mutation is approximately 1 percent in Ashkenazi Jewish individuals. Nature Genetics, 11, 198–200. CrossRef
- Struewing, J. P., Hartge, P., Wacholder, S., Baker, S. M., Berlin, M., McAdams, M., Timmerman, M. M., Brody, L. C., & Tucker, M. A. (1997). The risk of cancer associated with specific mutations of BRCA1 and BRCA2 among Askenazi Jews. New England Journal of Medicine, 336, 1401–1408. CrossRef
- Turk, T. (1993, May 22). Dispute stops progress on African burial study. Michigan Citizen, 15, p. A1.
- Defining the Subject of Consent in DNA Research
Journal of Medical Humanities
Volume 22, Issue 1 , pp 41-53
- Cover Date
- Print ISSN
- Online ISSN
- Kluwer Academic Publishers-Plenum Publishers
- Additional Links
- informed consent
- African Burial Ground Project