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一项关于选择使用植入前基因诊断来预防已知遗传疾病传播的夫妇的经济担忧的定性调查。

A qualitative inquiry of the financial concerns of couples opting to use preimplantation genetic diagnosis to prevent the transmission of known genetic disorders.

作者信息

Drazba Kathryn T, Kelley Michele A, Hershberger Patricia E

机构信息

Population Science, Pennington Biomedical Research Center, 6400 Perkins Road, Baton Rouge, LA, 70808, USA,

出版信息

J Genet Couns. 2014 Apr;23(2):202-11. doi: 10.1007/s10897-013-9638-7. Epub 2013 Aug 16.

Abstract

Preimplantation genetic diagnosis (PGD) is an innovative prenatal testing option because the determination of whether a genetic disorder or chromosomal abnormality is evident occurs prior to pregnancy. However, PGD is not covered financially under the majority of private and public health insurance institutions in the United States, leaving couples to decide whether PGD is financially feasible. The aim of this qualitative study was to understand the role of finances in the decision-making process among couples who were actively considering PGD. In-depth, semi-structured interviews were completed with 18 genetic high-risk couples (36 individual partners). Grounded theory guided the analysis, whereby three themes emerged: 1) Cost is salient, 2) Emotions surrounding affordability, and 3) Financial burden and sacrifice. Ultimately, couples determined that the opportunity to avoid passing on a genetic disorder to a future child was paramount to the cost of PGD, but expressed financial concerns and recognized financial access as a major barrier to PGD utilization.

摘要

植入前基因诊断(PGD)是一种创新的产前检测方法,因为对遗传疾病或染色体异常是否明显的判定在怀孕前就已进行。然而,在美国,大多数私人和公共医疗保险机构都不提供PGD的费用报销,这使得夫妻双方不得不自行决定PGD在经济上是否可行。这项定性研究的目的是了解经济因素在积极考虑PGD的夫妻决策过程中所起的作用。研究人员对18对遗传高风险夫妻(36位个体伴侣)进行了深入的半结构化访谈。扎根理论指导了分析过程,由此出现了三个主题:1)成本很突出,2)围绕可承受性的情绪,以及3)经济负担和牺牲。最终,夫妻们认为避免将遗传疾病传给未来孩子的机会比PGD的成本更为重要,但他们也表达了对经济的担忧,并认识到经济渠道是PGD应用的主要障碍。

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