Genetic screening of targeted subpopulations: The role of communal discourse in evaluating sociocultural implications

Genetic Testing

Volumn 1, Issue 4, 1998, Pages 269-274

  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 TO HEALTH; COMPARATIVE STUDY; CONFIDENTIALITY; CULTURAL ANTHROPOLOGY; CULTURAL FACTOR; FAMILY HEALTH; GENETIC PREDISPOSITION; GENETIC SCREENING; GENETICS; GENETICS AND REPRODUCTION; HEALTH EDUCATION; HUMAN; PATIENT ATTITUDE; PERCEPTION; PSYCHOLOGICAL ASPECT; RISK ASSESSMENT; SOCIAL PSYCHOLOGY; TABOO;

GENETICS AND REPRODUCTION;

ATTITUDE TO HEALTH; CONFIDENTIALITY; CULTURAL CHARACTERISTICS; CULTURE; FAMILY HEALTH; GENETIC PREDISPOSITION TO DISEASE; GENETIC SCREENING; HEALTH EDUCATION; HUMANS; INDIANS, NORTH AMERICAN; PATIENT ACCEPTANCE OF HEALTH CARE; PREJUDICE; RISK ASSESSMENT; SOCIAL PERCEPTION; TABOO;

EID: 0031291721     PISSN: 10906576     EISSN: None     Source Type: Journal    
DOI: 10.1089/gte.1997.1.269     Document Type: Article

References (37)

1. AMERICAN SOCIETY OF CLINICAL ONCOLOGY. (1996). Genetic testing for cancer susceptibility. J. Clin. Oncol. 14, 1730-1736.
2. ANDREWS, L.B., FULLARTON, J.E., HOLTZMAN, N.A., and MOTULSKY, A.G. (1994). Assessing Genetic Risks: Implications for Health and Social Policy. (National Academy Press, Washington, D.C.).
3. BILLINGS, P.R., KOHN, M.A., CUEVAS, M., BECKWITH, J., ALPER, J.S., and NATOWICZ, M.R. (1992). Discrimination as a consequence of genetic testing. Am. J. Hum. Genet. 50, 476-482.
4. BOTKIN, J.R., CROYLE, R.T., SMITH, K.R., BATY, B.J., LERMAN, C., GOLDGAR, D.E., WARD, J.M., FLICK, B.J., and NASH, J.E. (1996). A model protocol for evaluating the behavioral and psychosocial effects of BRCA1 testing. J. Natl. Cancer Inst. 88, 872-882.
5. BROIDE, E., ZEIGLER, M., ECKSTEIN, J., and BACH, G. (1993). Screening for carriers of Tay-Sachs disease in the ultraorthodox Ashkenazi Jewish community in Israel. Am. J. Med. Genet. 47, 213-215.
6. CAPLAN, A. (1994). Handle with care: race, class, and genetics. In Justice and the Human Genome Project. T. Murphy, and M. Lappe, eds. (University of California Press, Berkeley) pp. 30-45.
7. CHAVEZ, L.R., HUBBELL, F.A., McMULLIN, J.M., MARTINEZ, R.G., and MISHRA, S.I. (1995). Structure and meaning in models of breast and cervical cancer risk factors: a comparison of perceptions among Latinas, Anglo women, and physicians. Med. Anth. Q. 9, 40-74.
8. COLLINS, F.S. (1996). BRCA1 - lots of mutations, lots of dilemmas. N. Engl. J. Med. 334, 186-188.
9. DANKERT-ROELSE, J.E., and TE MEERMAN, G.J. (1997). Screening for cystic fibrosis - time to change our position? N. Engl. J. Med. 337, 997-999.
10. DEVGAN, S.A., HENDERSON, B.E., YU, M.C., SHI, C.Y., PIKE, M.C., ROSS, R.K., and REICHARDT, J.K. (1997). Genetic variation of 3 beta-hydroxysteroid dehydrogenase type II in three racial/ethnic groups: Implications for prostate cancer risk. Prostate 33, 9-12.
11. DIBBLE, S.L., VANONI, J.M., and MIASKOWSKI, C. (1997). Women's attitudes toward breast cancer screening procedures: differences by ethnicity. Women's Health Issues 7, 47-54.
12. FOSTER, M.W., EISENBRAUN, A.J., and CARTER, T.H. (1997). Communal discourse as a supplement to informed consent in genetic research. Nature Genet. 17, 277-279.
13. GARBER, J.E., and SCHRAG, D. (1996). Testing for inherited cancer susceptibility. J. Am. Med. Assoc. 275, 1928-1929.
14. GELLER, G., BOTKIN, J.R., GREEN, M.J., PRESS, N., BIESECKER, B.B., WILFOND, B., GRANA, G., DALY, M.B., SCHNEIDER, K., and KAHN, M.J. (1997). Genetic testing for susceptibility to adult-onset cancer: the process and content of informed consent. J. Am. Med. Assoc. 277, 1467-1474.
15. GOSTIN, L. (1991). Genetic discrimination: the use of genetically based diagnostic and prognostic tests by employers and insurers. Am. J. Law Med. 17, 109-144.
16. HILLER, E.H., LANDENBURGER, G., and NATOWICZ, M.R. (1997). Public participation in medical policy-making and the status of consumer autonomy: the example of newborn-screening programs in the United States. Am. J. Pub. Health. 87, 1280-1288.
17. HUDSON, K.L., ROTHENBERG, K.H., ANDREWS, L.B., KAHN, M.J., and COLLINS, F. (1995). Genetic discrimination and health insurance: an urgent need for reform. Science 270, 391-393.
18. HUMPHRIES, S.E., GALTON, D., and NICHOLLS, P. (1997). Genetic testing for familial hypercholesterolaemia: practical and ethical issues. Q. J. Med. 90, 169-181.
19. HUNTINGTON'S DISEASE SOCIETY OF AMERICA. (1994). Guidelines for Predictive Testing for Huntington's Disease. (Huntington's Disease Society of America, New York).
20. KING, P.A. (1992). The past as prologue: race, class, and gene discrimination. In Gene Mapping: Using Law and Ethics as Guides. G.J. Annas, Elias, S. eds. (Oxford University Press, Oxford) pp. 94-111.
21. LERMAN, C., NAROD, S., SCHULMAN, K. HUGHES, C., GOMEZ-CAMINERO, A., BONNEY G., GOLD, K., TROCK, B., MAIN, D., LYNCH, J., FULMORE, C., SNYDER, C., LEMON, S.J., CONWAY, T., TONIN, P., LENOIR, G., and LYNCH H. (1996). BRCA1 testing in families with hereditary breast-ovarian cancer: a prospective study of patient decision-making and outcomes. J. Am. Med. Assoc. 275, 1885-1892.
22. MALONE, K.E., DALING, J.R., THOMPSON, J.D., O'BRIEN, C.A., FRANCISCO, L.V., and OSTRANDER, E.A. (1998). BRCA1 mutations and breast cancer in the general population. J. Am. Med. Assoc. 279, 922-929.
23. MATHEWS, H.F., LANNIN, D.R., and MITCHELL, J.P. (1994). Corning to terms with advanced breast cancer: black women's narratives from eastern North Carolina. Soc. Sci. Med. 38, 789-800.
24. MERZ, B. (1987). Matchmaking scheme solves Tay-Sachs problem. J. Am. Med. Assoc. 258, 2636-2639.
25. NATIONAL ACADEMY OF SCIENCES. (1975). Genetic Screening: Programs, Principles and Research. (National Academy of Sciences, Washington, DC).
26. NEWMAN, B., MU, H., BUTLER, L.M., MILLIKAN, R.C., MOORMAN, P.G., and KING, M.-C. (1998). Frequency of breast cancer attributable to BRCA1 in a population-based series of American women. J. Am. Med. Assoc. 279, 915-921.
27. NIDORF, J.F., and NGO, K.Y. (1993). Cultural and psychosocial considerations in screening for thalassemia in the southeast Asian refugee population. Am. J. Med. Genet. 46, 398-402.
28. OBER, C., LESTER, L.A., MOTT, C. BILLSTRAND, C., LEMKE, A., VAN DER KEN, K., MARCUS, S., KRAUT, J., LLOYD-STILL, J., and BOOTH C. (1992). Ethnic heterogeneity and cystic fibrosis transmembrane regulator (CFTR) mutation frequencies in Chicago-area CF families. Am. J. Hum. Genet. 51, 1344-1348.
29. OFFIT, K., GILEWSKI, T., McGUIRE, P., SCHLUGER, A., HAMPEL, H., BROWN, K., SWENSEN, J., NEUHAUSEN, S., SKOLNICK, M., NORTON, L., and GOLDGAR D. (1996). Germline BRCA1 185delAG mutations in Jewish women with breast cancer. Lancet 347:1643-1645.
30. PARKER, L.S. (1995). Ethical concerns in the research and treatment of complex disease. Trends Genet. 11, 520-523.
31. PARKER, L.S., and MAJESKE, R.A. (1996). Standards of care and ethical concerns in genetic testing and screening. Clin. Obstet. Gynecol. 39, 873-884.
32. PHOENIX, D., LYBROOK, S., TROTTIER, R., HODGIN, F., and CRANDALL, L. (1995). Sickle cell screening policies as portent: how will the Human Genome Project affect public sector genetic services? J. Natl. Med. Assoc. 87, 807-812.
33. STRUEWING, J.P., HARTGE, P., WACHOLDER, S., BAKER, S.M., BERLIN, M., McADAMS, M., TIMMERMAN, M.M., BRODY, L.C., and TUCKER, M.A. (1997). The risk of cancer associated with specific mutations of BRCA1 and BRCA2 among Ashkenazi Jews. N. Engl. J. Med. 33, 1401-1408.
34. SZABO, C.I., and KING, M.C. (1997). Population genetics of BRCA1 and BRCA2. Am. J. Hum. Genet. 60, 1013-1020.
35. TASK FORCE ON GENETIC TESTING. (1997). Promoting Safe and Effective Genetic Testing in the United States: Report of the Task Force on Genetic Testing. (National Institutes of Health, Washington, DC).
36. WILFOND, B.S., and NOLAN, K. (1993). National policy development for the clinical application of genetic diagnostic technologies: Lessons from cystic fibrosis. J. Am. Med. Assoc. 270, 2948-2954.
37. WOLF, S. (1995). Beyond 'genetic discrimination': Toward the broader harm of geneticism. J. Law Med. Ethics. 23, 345-353.