Decision-making about reproductive choices among individuals at-risk for Huntington's disease.
Decision-making about reproductive choices among individuals at-risk for Huntington's disease.
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DOI：
10.1007/s10897-006-9080-1
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发表时间：
2007-06-01
影响因子：
1.9
通讯作者：
Marder, Karen
中科院分区：
文献类型：
--
作者：
Klitzman, Robert;Thorne, Deborah;Marder, Karen
我们探讨了有或没有接受过检测的HD风险个体如何做出生殖决定以及涉及哪些因素。我们深入采访了21个人（8个有突变，4个没有突变，9个未测试），每个人2小时。高危人群面临着一系列艰难的困境：是否怀孕和分娩，是否进行胎儿检测，是否进行胚胎植入前遗传学诊断，是否收养孩子。这些人权衡了相互竞争的欲望和担忧：他们自己的欲望与配偶的欲望与更广泛的道德担忧（例如，结束疾病;和/或遵循反对堕胎的命令）与对当前或未来后代利益的看法。产生了一个困惑，即该对谁负责，该承担多少责任。有些人随着时间的推移改变了他们的观点（例如，首先是“赌博”，然后是更谨慎）。这些数据对遗传咨询师和其他卫生保健工作者以及未来的研究具有重要意义，特别是随着越来越多的基因检测变得可用。
We explored how individuals at-risk for HD who have or have not been tested make reproductive decisions and what factors are involved. We interviewed 21 individuals (8 with and 4 without the mutation, and 9 un-tested) in-depth for 2 hours each. At-risk individuals faced a difficult series of dilemmas of whether to: get pregnant and deliver, have fetal testing, have pre-implantation genetic diagnosis, adopt, or have no children. These individuals weighed competing desires and concerns: their own desires vs. those of spouses vs. broader moral concerns (e.g., to end the disease; and/or follow dictates against abortion) vs. perceptions of the interests of current or future offspring. Quandaries arose of how much and to whom to feel responsible. Some changed their perspectives over time (e.g., first "gambling," then being more cautious). These data have critical implications for genetic counselors and other health care workers and future research, particularly as more genetic tests become available.