Communal discourse as a supplement to informed consent for genetic research

Nature Genetics

Volumn 17, Issue 3, 1997, Pages 277-279

  Foster, Morris W ^a   Eisenbraun, Ann J ^b   Carter, Thomas H ^c  

^a UNIVERSITY OF OKLAHOMA   (United States)

^b Oklahoma Oncology Inc   (United States)

^c UNIVERSITY OF OKLAHOMA COLLEGE OF MEDICINE   (United States)

Author keywords

[No Author keywords available]

Indexed keywords

AMERICAN INDIAN; ARTICLE; ATTITUDE; BIOMEDICAL AND BEHAVIORAL RESEARCH; GENETICS; GENETICS AND REPRODUCTION; HUMAN; HUMAN RELATION; INFORMED CONSENT; MEDICAL ETHICS; MEDICAL GENETICS; METHODOLOGY; PERCEPTION; POPULATION GENETICS; RESEARCH SUBJECT; RISK ASSESSMENT;

BIOMEDICAL AND BEHAVIORAL RESEARCH; GENETICS AND REPRODUCTION;

ATTITUDE; ETHICS, MEDICAL; GENETIC RESEARCH; GENETICS, MEDICAL; GENETICS, POPULATION; HUMANS; INDIANS, NORTH AMERICAN; INFORMED CONSENT; RESEARCH DESIGN; RESEARCH SUBJECTS; RESEARCHER-SUBJECT RELATIONS; RISK ASSESSMENT; SOCIAL PERCEPTION; THIRD-PARTY CONSENT;

EID: 0031278323     PISSN: 10614036     EISSN: 15461718     Source Type: Journal    
DOI: 10.1038/ng1197-277     Document Type: Letter

References (36)

1. Faden, R. & Beauchamp, T. A History and Theory of Informed Consent (Oxford University Press, New York, 1986).
2. Goldworth, A. Informed consent in the human genome enterprise. Cambr. Q. Health Care Ethics 4, 296-303 (1995).
3. American Society of Human Genetics. ASHG report: Statement on informed consent for genetic research. Am. J. Hum. Genet. 59, 471-474 (1996).
4. Reilly, P., Boshar, M. & Holtzman, S. Ethical issues in genetic research: Disclosure and informed consent. Nature Genet. 15, 16-20 (1997).
5. Weber, W., Mulvihill, J. & Narod, S. (eds.). Familial Cancer Management (CRC Press, Boca Raton, Florida, 1996).
6. Parker, L. Ethical concerns in the research and treatment of complex disease. Trends Genet. 11, 520-523 (1995).
7. Powers, M. Publication-related risks to privacy: Ethical implications of pedigree studies. IRB15, 7-11 (July-August, 1993).
8. Wolf, S. Beyond “genetic discrimination”: Toward the broader harm of geneticism. J. Law Med. Ethics 23, 345-353 (1995).
9. McPherson, E. Ethical implications of the Human Genome Diversity Project. Nursing Connections 8, 36-43 (1995).
10. Clayton, E. Panel comment: Why the use of anonymous samples for research matters- J. Law Med. Ethics 23, 375-377 (1995).
11. Thomson, G. Mapping disease genes: Family-based association studies. Am. J. Hum. Genet. 57, 487-498 (1995).
12. McKeigue, P. Mapping genes underlying ethnic differences in disease risk by linkage disequilibrium in recently admixed populations. Am. J. Hum. Genet. 60, 188-196(1997).
13. Shriver, M. et al. Ethnic-affiliation estimation by use of population-specific DNA markers. Am. J. Hum. Genet. 60, 957-964 (1997).
14. Sheffield, V., Nishimura, D. & Stone, E. Novel approaches to linkage mapping. Curr. Opin. Genet. Dev. 5, 335-341 (1995).
15. Scott, D. et al. An autosomal recessive nonsyndromic-hearing-loss locus identified by DNA pooling using two inbred Bedouin kindreds. Am. J. Hum. Genet. 58, 385-391 (1996).
16. Ellis, N. & German, J. Molecular genetics of Bloom’s syndrome. Hum. Mol. Genet. 5, 1457-1463 (1996).
17. Nysteun, A. et al. A cerebellar ataxia locus identified by DNA pooling to search for linkage disequilibrium in an isolated population from the Cayman Islands. Hum. Mol. Genet. 5, 525-531 (1996).
18. Escamilla, M. et al. Use of linkage disequilibrium approaches to map genes for bipolar disorder in the Costa Rican population. Am. J. Med. Genet. 67, 244-253 (1996).
19. Nikali, K. et al. Random search for shared chromosomal regions in four affected individuals: The assignment of a new hereditary ataxia locus. Am. J. Hum. Genet. 56, 1088-1095(1995).
20. Houwen, R. et al. Genome screening by searching for shared segments: Mapping a gene for benign recurrent intrahepatic cholestasis. Nature Genet. 8, 380-386(1994).
21. Szabo, C. & King, M-C. Population genetics of BRCA1 and BRCA2. Am. J. Hum. Genet. 60, 1013-1020 (1997).
22. Caplan, A. Handle with care: Race, class, and genetics, in Justice and the Human Genome Project (eds T. Murphy & M. Lappe) 30-45 (University of California Press, Berkeley, California, 1994).
23. Lerman, C. et al. BRCA1 testing in families with hereditary breast-ovarian cancer: A prospective study of patient decision-making and outcomes. JAMA 275, 1885-1892(1996).
24. Lynch, H. et al. A descriptive study of BRCA1 testing and reactions to disclosure of test results. Cancer 79, 2219-2228 (1997).
25. Kuczewski, M. Reconceiving the family: The process of consent in medical decision making. Hastings Cent. Rep. 26, 30-37 (1996).
26. Foucault, M. The Birth of the Clinic: An Archaeology of Medical Perception (Vintage, New York, 1973).
27. Weber, M. From Max Weber: Essays in Sociology (Oxford University Press, New York, 1946).
28. Good, B. Medicine, Rationality, and Experience: An Anthropological Perspective (Cambridge University Press, Cambridge, UK, 1994).
29. Hubbard, R & Lewontin, R. Pitfalls of genetic testing. N. Engl. J. Med. 334, 1192-1194(1996).
30. Freeman, W. Making research consent forms informative and understandable: The experience of the Indian Health Service. Cambr. Q. Health Care Ethics 3, 510-521 (1994).
31. Christakis, N. Ethics are local: Engaging cross-cultural variation in the ethics for clinical research. Soc. Sci. Med. 35, 1079-1091 (1992).
32. Dyer, O. US awards patent for tribesman’s DNA. Br. Med. J. 311, 1452 (1995).
33. Lehrman, O. US drops patent claim to Hagahai cell line. Nature 384, 500 (1996).
34. Weir, R. & Horton, J. DNA banking and informed consent—part 1. IRB 17, 1-4(1995).
35. Clayton, E. et al. Informed consent for genetic research on stored tissue samples. JAMA 274, 1786-1792 (1995).
36. Schrag, D., Kuntz, K„ Garber, J. & Weeks J. Decision analysis—effects of prophylactic mastectomy and oophorectomy on life expectancy among women with BRCA1 or BRCA2 mutations. N. Engl. J. Med. 336, 1465-1471 (1997).