Monique and Jacques Roboh Department of Genetic Research, The Department of Genetic and Metabolic Diseases, Hadassah, Hebrew University Medical Center, Jerusalem 91120, Israel.
Soc Sci Med. 2011 Dec;73(12):1741-7. doi: 10.1016/j.socscimed.2011.09.031. Epub 2011 Oct 19.
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.
这篇文章报告了现代宗教正统派阿什肯纳兹犹太成年人在以色列对匿名携带者匹配严重单基因疾病的态度,包括 Dor Yesharim(极端正统组织)的做法和通过医疗中心进行开放个体携带者测试,考察了这一重要选择是如何被知情、沟通、做出和反思的。对 2009 年至 2011 年间接受采访的 23 名现代宗教正统派阿什肯纳兹犹太人进行的半结构化访谈的定性分析表明,社会上有压力要求利用 Dor Yesharim;然而,受访者认为该组织建议不允许同一遗传条件的携带者结婚的政策不适合“爱情婚姻”,因为夫妻双方的承诺可能已经做出。对于那些被建议不要结婚的人来说,保密携带者测试是进行开放携带者测试的一个步骤。受访者对何时进行开放携带者测试的看法各不相同。与堕胎相比,胚胎植入前遗传学诊断被认为在宗教上更可取;然而,大多数携带者夫妇选择了产前测试和选择性堕胎,这对宗教犹太人的态度提出了挑战。本文讨论了携带者筛查如何不仅根据宗教教义,而且还根据非专业机构、个人经验和生殖选择知识进行背景化和解释。最后,我们讨论了在面临风险的宗教社区中,对携带者筛查的伦理进行社会分析的影响。