School of Social Sciences, Cardiff University, Cardiff, Wales, UK.
Medical Genetics, University of Wales College of Medicine, Cardiff, UK.
Arch Dis Child. 2020 Jan;105(1):74-79. doi: 10.1136/archdischild-2019-316911. Epub 2019 Jul 11.
To explore social workers' and medical advisors' accounts of genetic testing in adoption.
A qualitative study using semi-structured interviews to gather in-depth accounts of retrospective cases. Data were analysed thematically to identify professionals' knowledge and expectations.
Twenty professionals working in adoption services (including 8 medical advisors and 12 social workers) participated in this study. Social workers adopted an essentialist (single-gene) model to discuss genetic testing in relation to past cases. They assumed that testing was a generic procedure for detecting the presence or absence of a specific aetiology, the results of which were believed to be definitive and mutually exclusive. By contrast, medical advisors were circumspect and agnostic about the meaning of results, especially in relation to chromosomal microarray testing. Whereas social workers believed that genetic testing provided clarity in assessment and therefore assisted adoption, medical advisors emphasised the uncertainties of testing and the possibility that prospective adopters might be misled. Medical advisors also reported inappropriate requests to test children where there was a family history of a genetic condition, or to confirm or exclude a diagnosis of fetal alcohol spectrum disorder in children presenting with non-specific dysmorphic features.
Recent advances in genetic technologies are changing the ways in which professionals understand and tolerate uncertainty in adoption. Social workers and medical advisors have different understandings and expectations about the clinical utility of genetic testing. These findings have implications for social work training about genetic testing and enabling effective communication between professional groups.
探讨社会工作者和医疗顾问在收养中对基因检测的看法。
采用半结构化访谈的定性研究方法，收集回顾性案例的深入资料。通过主题分析来识别专业人员的知识和期望。
共有 20 名从事收养服务的专业人员（包括 8 名医疗顾问和 12 名社会工作者）参与了这项研究。社会工作者采用本质主义（单基因）模型来讨论与过去案例相关的基因检测。他们假设检测是一种用于检测特定病因是否存在的通用程序，结果被认为是明确的和互斥的。相比之下，医疗顾问对结果的含义持谨慎和不可知论的态度，尤其是在涉及染色体微阵列检测时。社会工作者认为基因检测为评估提供了明确性，从而有助于收养，而医疗顾问则强调了检测的不确定性以及潜在的误导准养父母的可能性。医疗顾问还报告了不适当的请求，要求对有遗传病史的儿童进行检测，或者在有非特异性畸形特征的儿童中确认或排除胎儿酒精谱系障碍的诊断。
遗传技术的最新进展正在改变专业人员理解和容忍收养中不确定性的方式。社会工作者和医疗顾问对基因检测的临床效用有不同的理解和期望。这些发现对遗传检测的社会工作者培训以及促进专业群体之间的有效沟通具有重要意义。
