Centre for Research Ethics and Bioethics, Department of Public Health and Caring Sciences, Uppsala University, Box 564, 751 22, Uppsala, Sweden.
BMC Med Ethics. 2020 Apr 25;21(1):30. doi: 10.1186/s12910-020-00470-w.
Preconception Expanded Carrier Screening (ECS) is a genetic test offered to a general population or to couples who have no known risk of recessive and X-linked genetic diseases and are interested in becoming parents. A test may screen for carrier status of several autosomal recessive diseases at one go. Such a program has been piloted in the Netherlands and may become a reality in more European countries in the future. The ethical rationale for such tests is that they enhance reproductive autonomy. The dominant conception of autonomy is individual-based. However, at the clinic, people deciding on preconception ECS will be counselled together and are expected to make a joint decision, as a couple. The aim of the present study was to develop an understanding of autonomous decisions made by couples in the context of reproductive technologies in general and of preconception ECS in particular. Further, to shed light on what occurs in reproductive clinics and suggest concrete implications for healthcare professionals.
Based on the shift in emphasis from individual autonomy to relational autonomy, a notion of couple autonomy was suggested and some features of this concept were outlined. First, that both partners are individually autonomous and that the decision is reached through a communicative process. In this process each partner should feel free to express his or her concerns and preferences, so no one partner dominates the discussion. Further, there should be adequate time for the couple to negotiate possible differences and conclude that the decision is right for them. The final decision should be reached through consensus of both partners without coercion, manipulation or miscommunication. Through concrete examples, the suggested notion of couple autonomy was applied to diverse clinical situations.
A notion of couple autonomy can be fruitful for healthcare professionals by structuring their attention to and support of a couple who is required to make an autonomous joint decision concerning preconception ECS. A normative implication for healthcare staff is to allow the necessary time for decision-making and to promote a dialogue that can increase the power of the weaker part in a relationship.
孕前扩展携带者筛查 (ECS) 是一项向一般人群或没有隐性和 X 连锁遗传疾病已知风险且有生育意愿的夫妇提供的基因检测。一次检测可以筛查几种常染色体隐性疾病的携带者状态。该计划已在荷兰试行，未来可能在更多欧洲国家成为现实。此类测试的伦理依据是它们增强了生殖自主权。自主的主导概念是基于个体的。然而，在诊所，决定进行孕前 ECS 的人将一起接受咨询，并预计作为夫妻共同做出决定。本研究旨在了解夫妻在生殖技术背景下做出的自主决策，特别是在孕前 ECS 方面。此外，揭示生殖诊所中发生的情况，并为医疗保健专业人员提出具体建议。
基于从个体自主到关系自主的重点转移，提出了夫妻自主的概念，并概述了该概念的一些特征。首先，双方都是个体自主的，并且决策是通过沟通过程达成的。在这个过程中，每个伴侣都应该自由地表达自己的担忧和偏好，因此没有一方主导讨论。此外，夫妻双方应该有足够的时间来协商可能存在的分歧，并得出这个决定对他们来说是正确的结论。最终决定应该是双方达成共识，没有胁迫、操纵或误解。通过具体示例，将夫妻自主的概念应用于各种临床情况。
夫妻自主的概念可以为医疗保健专业人员提供有益的指导，帮助他们关注并支持需要就孕前 ECS 做出自主联合决策的夫妻。对医疗保健人员的规范性建议是允许他们有必要的时间做出决策，并促进对话，从而增强关系中较弱一方的权力。
