The Rise of Genetic Couplehood? A Comparative View of Premarital Genetic Testing

The Rise of Genetic Couplehood? A Comparative View of Premarital Genetic Testing
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遗传耦合的兴起？

DOI：
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发表时间：
2006
期刊：
影响因子：
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通讯作者：
G. Siegal
G. Siegal
中科院分区：
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文献类型：
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作者：
B. Prainsack;G. Siegal

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Dor Yeshorim是一个基因检测项目，专注于欧洲、美国和以色列东正教犹太社区未来夫妇的“基因相容性”，是我们论文的核心。我们讨论的风险，使有效实施的多尔Yeshorim模型在东正教人群的具体理解。此外，我们比较多尔Yeshorim在塞浦路斯地中海贫血症的婚前基因检测方案，并分析特定的社会实践中产生不同的概念，在这两个项目的遗传特性。在塞浦路斯的方案中，披露了个人携带者状况，不利的遗传携带者状况是在个人一级概念化的，往往通过在怀孕时进行产前遗传诊断来解决。在多尔·耶肖里姆的案例中，没有关于携带者身份的信息，而只是揭示了双方的“遗传相容性”，出现了“遗传夫妇关系”的概念，这一概念将“遗传风险”概念化，而不是单独地，而是作为遗传联合性的问题。如果一对未来的夫妇被发现“基因不相容”，婚姻计划通常会被取消。此外，通过不披露个人携带者的信息，多尔·耶肖里姆成功地避免了一个“世俗”基因检测计划所面临的紧迫问题：“知道太多”的危险。
Dor Yeshorim, a genetic testing programme focusing on the ‘genetic compatibility’ of prospective couples in Orthodox Jewish communities in Europe, the US and Israel, is at the centre of our paper. We discuss the specific understandings of risks that enable the effective implementation of the Dor Yeshorim model in Orthodox populations. Furthermore, we compare Dor Yeshorim to the premarital genetic testing programme for thalassaemia in Cyprus and analyse the particular social practices which generate different notions of genetic identity in these two projects. In the Cypriot programme, where individual carrier status is disclosed, unfavourable genetic carrier status is conceptualized on the individual level and often solved by resorting to prenatal genetic diagnosis upon pregnancy. In the case of Dor Yeshorim, where no information on carrier status but only on the ‘genetic compatibility’ of both partners is revealed, a notion of ‘genetic couplehood’ arises which conceptualizes ‘genetic risk’ not individually but as a matter of genetic jointness. If a prospective couple is found out to be ‘genetically incompatible’, marriage plans usually are cancelled. Furthermore, by not disclosing individual carrier information, Dor Yeshorim successfully avoids a pressing issue which ‘secular’ genetic testing programmes struggle with: the peril of ‘knowing too much’.