Predictive Genetic Testing of Children for Adult-Onset Conditions: Negotiating Requests with Parents.
Predictive Genetic Testing of Children for Adult-Onset Conditions: Negotiating Requests with Parents.
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DOI：
10.1007/s10897-016-0018-y
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发表时间：
2017-04
影响因子：
1.9
通讯作者：
Lucassen A
中科院分区：
文献类型：
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作者：
Fenwick A;Plantinga M;Dheensa S;Lucassen A
医疗保健专业人员（HCP）经常面临来自父母的要求，要求对儿童进行成人发病条件的预测性基因检测。关于HCP如何处理这些测试请求，我们知之甚少，因为指南建议将此类测试推迟到成年，除非在此之前进行测试具有医疗益处。我们的研究探讨了HCP和父母之间的决策过程。半结构化访谈进行了34个HCP在8个区域遗传服务在英国各地，数据进行了专题分析。我们发现，许多HCP对此类请求并没有说“是”或“否”，而是将咨询视为协商最佳检测时间的机会。他们认为，这有助于父母做出深思熟虑的决定，因为父母在要求检测后的最终决定往往是推迟对孩子的检测。在父母的要求仍然是一个持续的愿望的情况下，大多数HCP说，他们会同意测试，得出的结论是，不测试将不符合儿童更广泛的最佳利益。作为确定儿童最佳利益和促进共同决策的一项策略，我们建议HCP将父母的检测请求重新定义为关于成人发病疾病检测最佳时间的讨论。
Healthcare professionals (HCPs) regularly face requests from parents for predictive genetic testing of children for adult-onset conditions. Little is known about how HCPs handle these test requests, given that guidelines recommend such testing is deferred to adulthood unless there is medical benefit to testing before that time. Our study explored the process of decision-making between HCPs and parents. Semi-structured interviews were conducted with 34 HCPs in 8 regional genetic services across the UK, and data were thematically analysed. We found that instead of saying ‘yes’ or ‘no’ to such requests, many HCPs framed the consultation as an opportunity to negotiate the optimal time of testing. This, they argued, facilitates parents’ considered decision-making, since parents’ eventual decisions after requesting a test was often to defer testing their child. In cases where parents’ requests remained a sustained wish, most HCPs said they would agree to test, concluding that not testing would not serve the child’s wider best interest. As a strategy for determining the child’s best interest and for facilitating shared decision-making, we recommend that HCPs re-frame requests for testing from parents as a discussion about the optimal time of testing for adult-onset disease.