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说西班牙语和英语的孕妇对cfDNA及其他产前筛查的看法:实践与伦理思考

Spanish- and English-Speaking Pregnant Women's Views on cfDNA and Other Prenatal Screening: Practical and Ethical Reflections.

作者信息

Floyd Erin, Allyse Megan A, Michie Marsha

机构信息

Geisel School of Medicine, Dartmouth College, Hanover, NH, USA.

Biomedical Ethics Research Program, Mayo Clinic, Rochester, MN, USA.

出版信息

J Genet Couns. 2016 Oct;25(5):965-77. doi: 10.1007/s10897-015-9928-3. Epub 2016 Jan 7.

Abstract

The rapid clinical implementation of cell-free DNA (cfDNA) screening, a non-invasive method of prenatal genetic screening, has outpaced research on its social and ethical implications. This study is the first to compare the ethical and practical views of Spanish- and English-speaking pregnant women in the United States about cfDNA screening. Semi-structured interviews were conducted with diverse Spanish- and English-speaking women who had received prenatal care at a large academic medical center. Of the 24 interviewees, ten were Latinas who were interviewed in Spanish; English-language interviews were conducted with seven non-Hispanic Asian and seven non-Hispanic White women. Participants held positive opinions concerning the accuracy of cfDNA screening and often noted that it would enhance preparedness. Participants also expressed concerns about the possibility of inaccurate results and the potentially negative effects of cfDNA screening on the experience of pregnancy. Differences emerged between Spanish and English speakers in their portrayals of their relationships with prenatal health care providers, the extent to which they questioned providers' advice, their ethical concerns, and their informational needs. We emphasize the importance of customizing prenatal test counseling to the needs of the individual patient, providing educationally appropriate counseling and literature, and mitigating potential language barriers.

摘要

游离DNA(cfDNA)筛查作为一种非侵入性的产前基因筛查方法,在临床中的迅速应用已超过了对其社会和伦理影响的研究。本研究首次比较了美国说西班牙语和英语的孕妇对cfDNA筛查的伦理和实际看法。对在一家大型学术医疗中心接受产前护理的不同说西班牙语和英语的女性进行了半结构化访谈。在24名受访者中,有10名是拉丁裔,用西班牙语进行访谈;对7名非西班牙裔亚洲女性和7名非西班牙裔白人女性进行了英语访谈。参与者对cfDNA筛查的准确性持积极看法,并经常指出它会增强准备工作。参与者还对结果不准确的可能性以及cfDNA筛查对怀孕体验的潜在负面影响表示担忧。说西班牙语和英语的人在描述他们与产前医疗保健提供者的关系、他们质疑提供者建议的程度、他们的伦理担忧以及他们的信息需求方面存在差异。我们强调根据个体患者的需求定制产前检测咨询、提供教育程度合适的咨询和资料以及消除潜在语言障碍的重要性。

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