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应对治疗与转诊请求:PGD专业人员如何讨论日常实践中出现的伦理挑战。

Dealing with treatment and transfer requests: how PGD-professionals discuss ethical challenges arising in everyday practice.

作者信息

Soto-Lafontaine Melisa, Dondorp Wybo, Provoost Veerle, de Wert Guido

机构信息

Department of Health Ethics & Society, CAPHRI Care and Public Health Research School, GROW School for Oncology and Developmental Biology, Maastricht University, PO Box 616, 6200 MD, Maastricht, The Netherlands.

Bioethics Institute Ghent, Ghent University, Blandijnberg 2, 9000, Ghent, Belgium.

出版信息

Med Health Care Philos. 2018 Sep;21(3):375-386. doi: 10.1007/s11019-017-9811-0.

Abstract

How do professionals working in pre-implantation genetic diagnosis (PGD) reflect upon their decision making with regard to ethical challenges arising in everyday practice? Two focus group discussions were held with staff of reproductive genetic clinics: one in Utrecht (The Netherlands) with PGD-professionals from Dutch PGD-centres and one in Prague (Czech Republic) with PGD-professionals working in centres in different European countries. Both meetings consisted of two parts, exploring participants' views regarding (1) treatment requests for conditions that may not fulfill traditional indications criteria for PGD, and (2) treatment and transfer requests involving welfare-of-the-child considerations. There was general support for the view that people who come for PGD will have their own good reasons to consider the condition they wish to avoid as serious. But whereas PGD-professionals in the international group tended to stress the applicants' legal right to eventually have the treatment they want (whatever the views of the professional), participants in the Dutch group sketched a picture of shared decision-making, where professionals would go ahead with treatment in cases where they are able to understand the reasonableness of the request in the light of the couple's reproductive history or family experience. In the international focus group there was little support for guidance stating that welfare-of-the child considerations should be taken into account. This was different in the Dutch focus group, where shared decision-making also had the role of reassuring professionals that applicants had adequately considered possible implications for the welfare of the child.

摘要

从事植入前基因诊断(PGD)的专业人员如何看待他们在日常实践中面对伦理挑战时所做的决策?我们与生殖遗传诊所的工作人员进行了两次焦点小组讨论:一次在荷兰乌得勒支,与荷兰PGD中心的专业人员进行;另一次在捷克共和国布拉格,与在不同欧洲国家中心工作的PGD专业人员进行。两次会议都由两部分组成,探讨参与者对于(1)可能不符合PGD传统适应症标准的病症的治疗请求,以及(2)涉及儿童福利考量的治疗和移植请求的看法。普遍支持这样一种观点,即前来接受PGD的人会有他们自己的充分理由认为他们希望避免的病症很严重。但是,国际小组中的PGD专业人员倾向于强调申请人最终接受他们想要的治疗的合法权利(无论专业人员的观点如何),而荷兰小组的参与者描绘了一幅共同决策的图景,即专业人员在能够根据夫妻的生育史或家庭经历理解请求的合理性时,会继续进行治疗。在国际焦点小组中,对于应考虑儿童福利的指导意见几乎没有支持。荷兰焦点小组的情况则不同,在那里共同决策还有一个作用,即让专业人员放心,申请人已经充分考虑了对儿童福利可能产生的影响。

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Preimplantation genetic diagnosis: does age of onset matter (anymore)?植入前基因诊断:发病年龄(现在)还重要吗?
Med Health Care Philos. 2009 Jun;12(2):187-202. doi: 10.1007/s11019-008-9171-x. Epub 2008 Nov 1.

本文引用的文献

1
Prenatal and pre-implantation genetic diagnosis.产前和植入前遗传学诊断。
Nat Rev Genet. 2016 Sep 15;17(10):643-56. doi: 10.1038/nrg.2016.97.
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Evaluating the welfare of the child in same-sex families.评估同性家庭中儿童的福利。
Hum Reprod. 2011 Jul;26(7):1609-15. doi: 10.1093/humrep/der109. Epub 2011 Apr 14.

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