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基因组学能否消除采用过程中的不确定性?社会工作者和医学顾问对基因检测的看法。

Can Genomics Remove Uncertainty from Adoption? Social Workers' and Medical Advisors' Accounts of Genetic Testing.

作者信息

Arribas-Ayllon Michael, Shelton Katherine, Clarke Angus

机构信息

School of Social Sciences, Cardiff University, Cardiff, Wales, UK.

School of Psychology, Cardiff University, Cardiff, Wales, UK.

出版信息

Br J Soc Work. 2021 Feb 24;52(2):719-737. doi: 10.1093/bjsw/bcab017. eCollection 2022 Mar.

Abstract

Genetic testing is controversial in adoption with professionals taking different positions on whether children should be protected from genetic information or whether it can be used to assist adoption. In this article, we argue that advances in 'genome-wide' testing add further complications to these debates. Although next-generation sequencing (NGS) and microarray-based technologies can offer high-quality molecular diagnoses for a variety of conditions, they also increase the burden of interpretation. For these reasons, adoption professionals will need to understand the relevance and complexity of biomedical information. Our study explores the accounts of social workers' and medical advisors' knowledge and reasoning about genetic testing in adoption. Twenty participants, including social workers, managers, medical advisors and paediatricians, were recruited from adoption services in England and Wales. A key finding revealed that medical professionals reported increasing pressure to test children prior to adoption, whilst social workers justified testing on the basis that it reduced uncertainty and therefore assisted adoption. Professionals' accounts of genetic testing suggest that social workers may not be aware of the potential of microarray and NGS technologies. This has important implications for adoption because increases in genomic uncertainty can stigmatise children and disadvantage their prospects for adoption.

摘要

基因检测在收养领域存在争议,专业人士对于儿童是否应被保护以免接触基因信息,或者基因检测结果能否用于辅助收养持不同立场。在本文中,我们认为“全基因组”检测技术的进步给这些争论增添了更多复杂性。尽管新一代测序(NGS)和基于微阵列的技术能够针对多种病症提供高质量的分子诊断,但它们也增加了解读的负担。基于这些原因,收养领域的专业人士需要了解生物医学信息的相关性和复杂性。我们的研究探讨了社会工作者和医学顾问对于收养中基因检测的知识及推理情况。从英格兰和威尔士的收养服务机构招募了包括社会工作者、管理人员、医学顾问和儿科医生在内的20名参与者。一项关键发现显示,医学专业人士表示在收养前对儿童进行检测的压力越来越大,而社会工作者认为检测合理,理由是检测能减少不确定性,从而有助于收养。专业人士对基因检测的描述表明,社会工作者可能并未意识到微阵列和NGS技术的潜力。这对收养有着重要影响,因为基因组不确定性的增加可能会给儿童带来污名化,并使其收养前景处于不利地位。

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