"The Most Important Test You'll Ever Take"?: attitudes toward confidential carrier matching and open individual testing among modern-religious Jews in Israel.
This article reports on attitudes of modern-religious Ashkenazi Jewish adults in Israel toward anonymous carrier matching for severe monogenic diseases by Dor Yesharim (the ultra-orthodox organization) and open individual carrier testing (through a medical center), examining how this important choice is being informed, communicated, made, and reflected on. Qualitative analysis of semi-structured interviews conducted with 23 modern-religious Ashkenazi Jews in 2009-2011 revealed social pressure to utilize Dor Yesharim; however, respondents considered its policy of advising against a marriage between partners who are carriers of the same genetic condition inappropriate for 'love marriages' where a couple's commitment may already be made. Confidential carrier testing was a stepping stone to open carrier testing for those advised not to marry. Respondents varied in their views on when open carrier tests should be conducted. Pre-implantation genetic diagnosis was considered religiously preferable to abortion; however most carrier couples opted for pre-natal testing and selective abortion, challenging stereotypes about the attitudes of religious Jews. It is discussed how carrier screening is contextualized and interpreted not just in terms of religious teachings, but in interaction with lay agency, personal experiences and knowledge of reproductive choices. We conclude by discussing the implications for the social analysis of the ethics of carrier screening in religious communities at risk.
Monique and Jacques Roboh Department of Genetic Research, The Department of Genetic and Metabolic Diseases, Hadassah, Hebrew University Medical Center, Jerusalem 91120, Israel.
Ayala
A
Frumkin
Aviad E
AE
Raz
Morasha
M
Plesser-Duvdevani
Sari
S
Lieberman
D000328:Adult; D005193:Family Planning Services; D005260:Female; D006580:Genetic Carrier Screening; D020022:Genetic Predisposition to Disease / Q000208:ethnology*; D005820:Genetic Testing / Q000379:methods / Q000706:statistics & numerical data; D006801:Humans; D007407:Interviews as Topic; D007557:Israel; D007585:Jews / Q000235:genetics / Q000523:psychology*; D008297:Male; D010342:Patient Acceptance of Health Care / Q000208:ethnology*; D055815:Young Adult