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本文引用的文献

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ESHRE PGD Consortium data collection XI: cycles from January to December 2008 with pregnancy follow-up to October 2009.ESHRE PGD 联盟数据收集 XI:2008 年 1 月至 12 月的周期,随访至 2009 年 10 月的妊娠情况。
Hum Reprod. 2012 Jul;27(7):1887-911. doi: 10.1093/humrep/des106. Epub 2012 May 8.
2
Prenatal genetic testing: an investigation of determining factors affecting the decision-making process.产前基因检测:影响决策过程的决定因素调查
J Genet Couns. 2013 Feb;22(1):76-89. doi: 10.1007/s10897-012-9498-6. Epub 2012 Apr 3.
3
The decision-making process of genetically at-risk couples considering preimplantation genetic diagnosis: initial findings from a grounded theory study.携带遗传风险的夫妇在考虑进行胚胎植入前遗传学诊断时的决策过程:一项扎根理论研究的初步发现。
Soc Sci Med. 2012 May;74(10):1536-43. doi: 10.1016/j.socscimed.2012.02.003. Epub 2012 Mar 7.
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Utilization of infertility treatments: the effects of insurance mandates.不孕症治疗的利用:保险要求的影响。
Demography. 2012 Feb;49(1):125-49. doi: 10.1007/s13524-011-0078-4.
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Barriers to conceiving sibling donors for sickle cell disease: perspectives from patients and parents.受孕镰状细胞病同胞供体的障碍:来自患者和家长的观点。
Ethn Health. 2011 Aug-Oct;16(4-5):431-45. doi: 10.1080/13557858.2011.558619.
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Development of an informational web site for recruiting research participants: process, implementation, and evaluation.用于招募研究参与者的信息网站的开发:过程、实施与评估。
Comput Inform Nurs. 2011 Oct;29(10):544-51; quiz 552-3. doi: 10.1097/NCN.0b013e318224b52f.
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Unraveling preimplantation genetic diagnosis for high-risk couples: implications for nurses at the front line of care.解读高危夫妇的植入前基因诊断:对一线护理护士的影响。
Nurs Womens Health. 2011 Feb-Mar;15(1):36-45. doi: 10.1111/j.1751-486X.2011.01609.x.
8
Expanding roles: a survey of public health genetic counselors.角色拓展:公共卫生遗传咨询师调查
J Genet Couns. 2010 Dec;19(6):593-605. doi: 10.1007/s10897-010-9313-1. Epub 2010 Aug 11.
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Insurance coverage and in vitro fertilization outcomes: a U.S. perspective.保险覆盖范围和体外受精结局:美国视角。
Fertil Steril. 2011 Mar 1;95(3):964-9. doi: 10.1016/j.fertnstert.2010.06.030. Epub 2010 Aug 5.
10
Women's experience of pre-implantation genetic diagnosis: a qualitative study.女性对胚胎植入前遗传学诊断的体验:一项定性研究。
Prenat Diagn. 2010 Aug;30(8):771-7. doi: 10.1002/pd.2542.

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.

DOI:10.1007/s10897-013-9638-7
PMID:23949612
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC3925761/
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。