"The Most Important Test You'll Ever Take"?: Attitudes toward confidential carrier matching and open individual testing among modern-religious Jews in Israel

Social Science and Medicine

Volumn 73, Issue 12, 2011, Pages 1741-1747

  Frumkin, Ayala ^a   Raz, Aviad E ^b   Plesser Duvdevani, Morasha ^a   Lieberman, Sari ^c  

^a HADASSAH HEBREW UNIVERSITY MEDICAL CENTER   (Israel)

^b BEN GURION UNIVERSITY OF THE NEGEV   (Israel)

^c SHAARE ZEDEK MEDICAL CENTER   (Israel)

Author keywords

Abortion; Autonomy; Dor yesharim; Family planning; Genetic carrier testing; Israel; Modern religious jews; Pre natal testing

Indexed keywords

ABORTION; AUTONOMY; DISEASE; ETHNICITY; FAMILY PLANNING; GENETICS; HEALTH POLICY; PUBLIC ATTITUDE; RELIGION; RISK ASSESSMENT; TESTING METHOD;

ADULT; ANXIETY; ARTICLE; ATTITUDE TO HEALTH; CONFIDENTIALITY; FEMALE; GENETIC COUNSELING; GENETIC SCREENING; HETEROZYGOTE DETECTION; HUMAN; ISRAEL; JEW; MALE; MARRIAGE; MEDICAL DECISION MAKING; MONOGENIC DISORDER; PERSONAL AUTONOMY; PRENATAL DIAGNOSIS; QUALITATIVE ANALYSIS; SELECTIVE ABORTION; SEMI STRUCTURED INTERVIEW; SOCIAL PROBLEM; SOCIAL STIGMA; STEREOTYPY;

ADULT; FAMILY PLANNING SERVICES; FEMALE; GENETIC PREDISPOSITION TO DISEASE; GENETIC TESTING; HETEROZYGOTE DETECTION; HUMANS; INTERVIEWS AS TOPIC; ISRAEL; JEWS; MALE; PATIENT ACCEPTANCE OF HEALTH CARE; YOUNG ADULT;

ISRAEL;

EID: 81555219467     PISSN: 02779536     EISSN: 18735347     Source Type: Journal    
DOI: 10.1016/j.socscimed.2011.09.031     Document Type: Article

References (45)

1. Aviner S. Testing a fetus for abnormalities: Responsa of Shlomo 2011, [Shut She'eilat Shlomo vol. 2 #312], Accessed 23.04.11. http://www.ravaviner.com/2011/02/testing-fetus-for-abnormalities.html.
2. Barlow-Stewart K., Burnett L., Proos A., Howell V., Huq F., Lazarus R., et al. A genetic screening programme for Tay-Sachs disease and cystic fibrosis for Australian Jewish high school students. Journal of Medical Genetics 2003, 40:e45.
3. Biesecker L. Surrendered autonomy for genetic screening. American Journal of Medical Genetics Part A 2004, 129A(2):165-168.
4. Birenbaum-Carmeli D. The politics of 'The Natural Family' in Israel: state policy and kinship ideologies. Social Science & Medicine 2009, 69:1018-1024.
5. Bornik Z.B., Dowlatabadia H. Genomics in Cyprus: challenging the social norms. Technology in Society 2008, 30(1):84-93.
6. Condit C.M. The meanings of the gene: Public debates about human heredity 1999, University of Wisconsin Press, Madison, WI.
7. Condit C.M. Science and society: how geneticists can help reporters to get their story right. Nature Reviews Genetics 2007, 8:815-820.
8. Condit C.M., Lynch J.A., Dubriwny T., Parrott R.L. Lay understanding and preference against use of the term "mutation". American Journal of Medical Genetics 2004, 130A:245-250.
9. Cowan R. Heredity and hope: The Case for genetic screening 2008, Harvard University Press, Cambridge, MA.
10. Denzin N.K., Lincoln Y. Handbook of qualitative research 1994, Sage, Thousand Oaks.
11. Don-Yehiya E. The book and the sword: the nationalist Yeshivot and political radicalism in Israel. Accounting for fundamentalism: The dynamic character of fundamentalist movements 1994, Chicago University Press, Chicago, IL. M. Marty, R. Scott Appleby (Eds.).
12. Don-Yehiya E. Orthodox Jewry in Israel and the American diaspora. Israel Studies 2005, 10(1):157-188.
13. Doolin B., Motion J. Christian lay understandings of preimplantation genetic diagnosis. Public Understanding of Science 2010, 19(6):669-685.
14. Eisenberg N. Science and the ethics of genetic screening. Yeshiva University Review 2003, Summer:9-15.
15. Ekstein J., Katzenstein H. The Dor Yesharim story: community-based carrier screening for Tay-Sachs disease. Advances in genetics 2001, 297-310. San Diego Academic Press, San Diego. M. Kaback (Ed.).
16. Featherstone K., Atkinson P., Bharadwaj A., Clarke A. Risky relations: Family, kinship and the new genetics 2006, Berg, Oxford.
17. Friedlander D., Feldman C. The modern shift to below-replacement fertility: has Israel's population joined the process?. Population Studies 1993, 47(2):295-330.
18. Friedman Ross L. Heterozygote carrier testing in high schools abroad: what are the lessons for the U.S.?. The Journal of Law, Medicine & Ethics 2006, 34(4):753-764.
19. Frumkin A., Zlotogora J. Genetic screening for reproductive purposes at school: is it a good strategy?. American Journal of Medical Genetics Part A 2007, 146A:264-269.
20. Gason A.A., Delatycki M.B., Metcalfe S.A., Aitken M. It's "back to school" for genetic screening. European Journal of Human Genetics 2006, 14:384-389.
21. Hershbergera P., Pierce P. Conceptualizing couples' decision making in PGD: emerging cognitive, emotional, and moral dimensions. Patient Education and Counseling 2010, 81:53-62.
22. Hoedemaeker R., ten Have H. Geneticization: the Cyprus case. Journal of Medicine and Philosophy 1998, 23(3):274-287.
23. Ir-Shay R. Family planning: a Halakhic-gender perspective. Nashim: A Journal of Jewish Women's Studies & Gender Issues 2006, 12:95-128.
24. Lakeman P., Plass A.M.C., Henneman L., Bezemer P.D., Cornel M.C., ten Kate L.P. Three-month follow-up of Western and non Western participants in a study on preconceptional ancestry-based carrier couple screening for cystic fibrosis and hemoglobinopathies in the Netherlands. Genetics in Medicine 2008, 10:820-830.
25. Lakeman P., Plass A.M.C., Henneman L., Bezemer P.D., Cornel M.C., ten Kate L.P. Preconceptional ancestry-based carrier couple screening for cystic fibrosis and haemoglobinopathies: what determines the intention to participate or not and actual participation?. European Journal of Human Genetics 2009, 17(8):999-1009.
26. Landau R. Religiosity, nationalism and human reproduction: the case of Israel. The International Journal of Sociology and Social Policy 2003, 23(12):64-81.
27. Landau R. Sex selection for social purposes in Israel. Journal of Med Ethics 2008, 34:10-18.
28. Leib J.R., Gollust S.E., Hull S.C., Wilfond B.S. Carrier screening panels for Ashkenazi Jews: is more better?. Genetic Medicine 2005, 7(3):185-190.
29. Mackler A. In vitro fertilization. Responsa: 1991-2000, the committee on Jewish law and standards of the conservative movement 2002, 510-525. The Rabbinical Assembly, New York. K. Abelson, D. Fine (Eds.).
30. Marteau T.M., Dormandy E., Michie S. A measure of informed choice. Health Expectations 2001, 4(2):99-108.
31. Mitchell J.J., Capua A., Clow C., Scriver C.R. Twenty-year outcome analysis of genetic screening programs of Tay-Sachs and β-Thalassemia disease carriers in high schools. American Journal of Medical Genetics 1996, 59:793-798.
32. Popovsky M. Jewish perspectives on the use of preimplantation genetic diagnosis. The Journal of Law, Medicine & Ethics 2007, 35:699-711.
33. Prainsack B., Sigal G. The rise of genetic couplehood? A comparative view of premarital genetic testing. BioSocieties 2006, 1:17-36.
34. Prainsack B., Sigal G. Genetic testing and screening in religious groups: perspectives of Jewish Haredi communities. Kin, gene, community: Reproductive technologies among Jewish Israelis 2010, 153-171. Berghan Books, NY. D. Birenbaum-Carmeli, Y. Carmeli (Eds.).
35. Raz A., Atar M. Upright generations of the future. Journal of Contemporary Ethnography 2004, 33:296-322.
36. Raz A.E., Vizner Y. Carrier matching and collective socialization in community genetics: Dor Yesharim and the reinforcement of stigma. Social Science & Medicine 2008, 67(9):1361-1369.
37. Rosner F. Modern Medicine and Jewish Ethics 1991, Ktav Publishing/Yeshiva Univ. Press, New York. 2d ed.
38. Shaw A. Risk and reproductive decisions: British Pakistani couples' responses to genetic counseling. Social Science & Medicine 2011, 73:111-120.
39. Shaw A., Hurst J. "I don't see any point in telling them": attitudes to sharing genetic information in the family and carrier testing of relatives among British Pakistani adults referred to a genetics clinic. Ethnicity and Health 2008, 13(5):417-434.
40. Shaw A., Hurst J. "What is this genetics, anyway?" Understandings of genetics, illness causality and inheritance among British Pakistani users of genetic services. Journal of Genetic Counseling 2008, 17(5):459-471.
41. Sher C., Orly R.Z., Manfred S.G., Shohat T. Factors affecting performance of prenatal genetic testing by Israeli Jewish women. American Journal of Medical Genetics 2003, 120A(3):418-422.
42. Steinberg A. Jewish perspectives. The embryo: Scientific discovery and medical ethic 2005, 21-39. Karger, Basel, Switzerland. S. Blazer, E.Z. Zimmer (Eds.).
43. Wailoo K., Pemberton S. The troubled dream of genetic medicine: Ethnicity and innovation in Tay-Sachs, cystic fibrosis, and sickle cell disease 2006, Johns Hopkins University Press, Baltimore.
44. Zlotogora J. Population programs for the detection of couples at risk for severe monogenic genetic diseases. Human Genetics 2009, 126(2):247-253.
45. Zlotogora J. Parental decisions to abort or continue a pregnancy with an abnormal finding after an invasive prenatal test. Prenatal Diagnosis 2002, 22:1102-1106.