What choices should we be able to make about designer babies? A Citizens' Jury of young people in South Wales
What choices should we be able to make about designer babies? A Citizens' Jury of young people in South Wales
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DOI：
10.1111/j.1369-7625.2006.00387.x
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发表时间：
2006-09-01
影响因子：
3.2
通讯作者：
Shaw, Anita
中科院分区：
文献类型：
--
作者：
Iredale, Rachel;Longley, Marcus;Shaw, Anita
背景年轻人将越来越多地选择使用新技术进行生殖决策，但在关于这一领域可接受的公共政策的辩论中很少听到他们的声音。捕捉年轻人对潜在深奥话题的看法是困难的，在方法上也是具有挑战性的。设计公民陪审团是一个审议过程，向一群普通人提出一个问题，允许他们审查专家证人提供的证据和个人证词，并做出裁决。这个公民陪审团探索了设计婴儿与遗传病、救世主兄弟姐妹和年轻人的性别选择之间的关系。参与者在Wals对14名16-19岁的年轻人进行了研究。结果对设计婴儿技术的接受是特定目的的；参与者认为它在预防遗传病和创造一个孩子来拯救兄弟姐妹方面是可以接受的，但不建议用于性别选择。陪审员表示，许可不应取决于父母的年龄，尽管应该评估某种程度的适宜性。阻止潜在父母出国被认为是不切实际的。这些年轻人认为，人类受精与胚胎学管理局的成员应该在20岁以下，“特制婴儿”这个词没有用。结论对这项技术的接受度的看法是微妙的，是基于对个人受益程度的隐含价值判断。年轻人可以对关于遗传学和生殖决策的辩论作出宝贵而有趣的贡献，必须使用各种创新方法确保他们参与决策进程。
Background Young people will increasingly have the option of using new technologies for reproductive decision making but their voices are rarely heard in debates about acceptable public policy in this area. Capturing the views of young people about potentially esoteric topics, such as genetics, is difficult and methodologically challenging.Design A Citizens' Jury is a deliberative process that presents a question to a group of ordinary people, allows them to examine evidence given by expert witnesses and personal testimonies and arrive at a verdict. This Citizens' Jury explored designer babies in relation to inherited conditions, saviour siblings and sex selection with young people.Participants Fourteen young people aged 16-19 in Wales.Results Acceptance of designer baby technology was purpose-specific; it was perceived by participants to be acceptable for preventing inherited conditions and to create a child to save a sibling, but was not recommended for sex selection. Jurors stated that permission should not depend on parents' age, although some measure of suitability should be assessed. Preventing potential parents from going abroad was considered impractical. These young people felt the Human Fertilisation and Embryology Authority should have members under 20 and that the term 'designer baby' was not useful.Conclusion Perspectives on the acceptability of this technology were nuanced, and based on implicit value judgements about the extent of individual benefit derived. Young people have valuable and interesting contributions to make to the debate about genetics and reproductive decision making and a variety of innovative methods must be used to secure their involvement in decision-making processes.