Choosing not to choose: reproductive responses of parents of children with genetic conditions or impairments
Choosing not to choose: reproductive responses of parents of children with genetic conditions or impairments
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DOI：
10.1111/j.1467-9566.2008.01110.x
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发表时间：
2009-01-01
影响因子：
2.9
通讯作者：
Kelly, Susan E.
中科院分区：
文献类型：
--
作者：
Kelly, Susan E.
患有遗传疾病或缺陷的儿童的父母在为高危父母提供产前筛查和测试选项（作为获得“健康”婴儿的手段）所带来的选择和困境方面处于独特的地位。本文报告了对孩子是美国全州农村遗传推广计划客户的父母进行的定性研究的结果。该分析旨在将患有遗传疾病或缺陷的儿童的父母的生活经历与随着产前检测技术不断普及而妇女面临的选择联系起来。报告称，该研究中的大多数父母选择不选择：避免未来怀孕、拒绝对随后怀孕进行产前检测或将检测限制为“仅供参考”。这些决定并不反映简单地拒绝医疗干预、反对堕胎和/或肯定受影响儿童的积极养育经历。相反，选择避免选择的条件似乎是一种负责任的养育策略，这种策略源于对生殖技术所提供的选择的矛盾心理。
Parents of children with genetic conditions or impairments stand in a unique position with regard to choices and dilemmas posed by prenatal screening and testing options offered to at-risk parents as a means to a 'healthy' baby. This article reports the results of a qualitative study of parents whose children are clients of a state-wide rural genetic outreach programme in the US. The analysis seeks to connect the lived experience of parents of children with genetic conditions or impairments to choices with which women are confronted as prenatal testing technologies continue to proliferate. It reports the finding that a majority of parents in the study chose not to choose: avoiding future pregnancies, declining prenatal testing for subsequent pregnancies, or limiting testing to 'for information only'. These decisions do not reflect simple rejection of medical intervention, opposition to abortion, and/or affirmation of a positive parenting experience with an affected child. Rather, choosing to avoid the condition of choice appears to be a strategy of responsible parenting that emerges from ambivalence towards the options presented by reproductive technologies.