Arrays in Postnatal and Prenatal Diagnosis: An Exploration of the Ethics of Consent
Arrays in Postnatal and Prenatal Diagnosis: An Exploration of the Ethics of Consent
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DOI：
10.1002/humu.22068
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发表时间：
2012-06-01
期刊：
影响因子：
3.9
通讯作者：
de Wert, Guido
中科院分区：
文献类型：
--
作者：
Dondorp, Wybo;Sikkema-Raddatz, Birgit;de Wert, Guido
在出生后和产前诊断中引入全基因组阵列提出了具有挑战性的伦理问题。在这里，我们探讨有关同意的伦理问题。一个重要的问题是，鉴于可能的结果和相关选择的广泛范围，全基因组阵列检测的知情同意实际上是否可行。拟议的“一般同意”替代办法必须在实践中加以研究。从伦理的角度来看，问题是同意是否仍能在通用方法中得到充分的“知情”。另一个尚未得到太多关注的问题是，应该允许父母或孕妇及其伴侣在多大程度上决定将或不会向他们报告的可能结果的范围。父母和准父母知情权和不知情权的范围和界限还远未明确。关于这些权利的内容和分量的复杂的规范性问题，只有在充分考虑到所有有关各方的权利和利益的情况下才能得到解答：预期和实际的父母、子女和亲属。本文是2011年欧洲人类遗传学学会会议前的一次工作组会议的结果，会上讨论了这些问题。Hum Mutat 33：916-922,2012。(C)2012年威利期刊公司。
The introduction of genome-wide arrays in postnatal and prenatal diagnosis raises challenging ethical issues. Here, we explore questions with regard to the ethics of consent. One important issue is whether informed consent for genome-wide array-based testing is in fact feasible, given the wide range of possible outcomes and related options. The proposed alternative of "generic consent" will have to be studied in practice. From an ethical point of view, the question is whether consent would still be sufficiently "informed" in a generic approach. Another issue that has not yet been given much attention is how far parents, or pregnant women and their partners, should be allowed to determine the range of possible outcomes that will or will not be reported back to them. The scope and limits of parents' and prospective parents' right to know or not to know are far from clear. The complex normative issues on the content and weight of these rights can only be answered by taking full account of the rights and interests of all the parties involved: prospective and actual parents, children, and relatives. This paper is the result of a working group meeting preceding the European Society of Human Genetics 2011 Conference, where these issues were addressed. Hum Mutat 33: 916-922, 2012. (C) 2012 Wiley Periodicals, Inc.