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“检测很重要,支持也很重要”:以色列遗传疾病支持小组领导人对残疾权利和产前诊断的态度

"Important to test, important to support": attitudes toward disability rights and prenatal diagnosis among leaders of support groups for genetic disorders in Israel.

作者信息

Raz Aviad

机构信息

Department of Behavioural Sciences, Ben-Gurion University of the Negev, Be'er Sheva 85105, Israel.

出版信息

Soc Sci Med. 2004 Nov;59(9):1857-66. doi: 10.1016/j.socscimed.2004.02.016.

Abstract

To situate the North American, and to some extent, European debate regarding disability rights and prenatal diagnosis in a social and cross-cultural context, this pilot study explored the views of leaders of organizations for disability rights and support groups for people with genetic conditions in Israel, where a similar debate has not emerged. Unlike many of their counterparts in North America, Israeli respondents were generally in favor of prenatal genetic testing as well as selective abortion, while at the same time expressing their commitment for already-born disabled individuals. The religious, legal, economic and socio-cultural context of this two-fold view of disability--which separates prenatal (preventive testing) and postnatal (supporting disability)--is discussed in order to further situate the debate in cross-cultural perspective. It is hypothesized that prenatal diagnosis and selective abortion are supported in secular Israeli society independently of the rabbinical stance, which forbids selective abortion, and in a way that reflects society's non-acceptance of congenital disability, veneration of the healthy body, and medical directiveness.

摘要

为了将北美以及在一定程度上欧洲关于残疾权利和产前诊断的辩论置于社会和跨文化背景中,这项试点研究探讨了以色列残疾权利组织领导人以及遗传疾病患者支持团体领导人的观点,在以色列尚未出现类似的辩论。与北美许多同行不同,以色列受访者普遍赞成产前基因检测以及选择性堕胎,同时表达了他们对已出生残疾个体的承诺。本文讨论了这种对残疾的双重看法的宗教、法律、经济和社会文化背景——将产前(预防性检测)和产后(支持残疾)区分开来——以便从跨文化角度进一步阐述这场辩论。据推测,在世俗的以色列社会中,产前诊断和选择性堕胎得到支持,这与拉比禁止选择性堕胎的立场无关,并且在某种程度上反映了社会对先天性残疾的不接受、对健康身体的崇敬以及医学指令。

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