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平衡需求与自主权:伴侣参与 cfDNA 检测决策。

Balancing Needs and Autonomy: The Involvement of Pregnant Women's Partners in Decisions About cfDNA.

机构信息

1 Cleveland Clinic, Cleveland, Ohio, USA.

出版信息

Qual Health Res. 2019 Jan;29(2):211-221. doi: 10.1177/1049732318796833. Epub 2018 Sep 5.

DOI:10.1177/1049732318796833
PMID:30182811
Abstract

Cell-free fetal DNA (cfDNA) screening is used to identify the presence of fetal genetic variants early in pregnancy. Patients' informed decision-making is central to the success of this new screen in clinical practice. Although research has focused on pregnant women's decision-making, little is known about partners' role and preferences as a member of the decision-making dyad. Using a grounded theory approach, this study analyzed 23 in-depth interviews to examine partners' perspectives about cfDNA screening and preferences with respect to their role in the decision-making process. Participants wished to be actively involved in testing decisions. They articulated a distinct set of needs and preferences in the decision-making process. Such involvement was hindered by several biological and logistical barriers. This study demonstrates the need to develop mechanisms that foster informed decision-making for cfDNA screening and related new reproductive genetic technologies that focus on not just the pregnant woman but also the decision-making dyad that includes her partner as well.

摘要

无细胞胎儿 DNA(cfDNA)筛查用于在妊娠早期识别胎儿遗传变异。患者知情决策是该新筛查在临床实践中成功的关键。尽管研究集中在孕妇的决策上,但对于伴侣作为决策对子的一员的作用和偏好知之甚少。本研究采用扎根理论方法,分析了 23 次深入访谈,以研究伴侣对 cfDNA 筛查的看法以及他们在决策过程中对自身角色的偏好。参与者希望积极参与测试决策。他们在决策过程中表达了一系列明确的需求和偏好。这种参与受到了一些生物学和后勤障碍的阻碍。本研究表明,需要开发一些机制,以促进 cfDNA 筛查和相关新型生殖遗传技术的知情决策,这些技术不仅关注孕妇,还关注包括其伴侣在内的决策对子。

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