美好生活的意义:利用戏剧表演加强患者和公众参与中多基因风险评分研究的沟通。

IF 1.5 Q4 GENETICS & HEREDITY Journal of Community Genetics Pub Date : 2023-10-01 Epub Date: 2023-02-10 DOI:10.1007/s12687-023-00635-1
Amy M Mason, Ifunanya Obi, Olamide Ayodele, Samuel A Lambert, Sarah Fahle
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引用次数: 0

摘要

这项患者和公众参与和参与(PPIE)工作的目的是探索简易剧场,将其作为一种工具,促进研究人员和患者/公众之间就多基因风险评分(PRS)在初级或二级护理中的使用进行双向对话。PRS是一种量化可遗传疾病或特征遗传风险的工具,可用于预测未来的健康结果。在英国,它们经常被认为是下一个需要实施的公共卫生工具,并且在消费者基因检测和面向患者的环境中的使用正在增加。尽管它们具有潜在的临床效用,但关于它们如何影响个人对疾病风险的感知和决策的更广泛主题是一个活跃的研究领域;然而,这主要是在将结果返回给患者的情况下发生的。我们与一个青年剧团和PPIE小组的患者合作,制作了两部短剧,讲述公众对PRS可以捕捉到的遗传风险信息的看法。这些剧本在研讨会上与患者/公众分享,以促进关于PRS及其感知的益处、担忧和情绪反应的讨论。与表演者和患者/公众的讨论提出了三个关键问题:(1)数据是否可信?;(2) 知道基因风险真的对患者有帮助吗?;以及(3)是什么让生命有价值?创造和观看虚构的叙事有助于所有参与者探索PRS在临床环境中的潜在用途,为未来的研究考虑提供信息,并改善研究人员与PPIE小组非专业成员之间的沟通。
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What makes a good life: using theatrical performance to enhance communication about polygenic risk scores research in patient and public involvement.

The aim of this patient and public involvement and engagement (PPIE) work was to explore improvised theatre as a tool for facilitating bi-directional dialogue between researchers and patients/members of the public on the topic of polygenic risk scores (PRS) use within primary or secondary care. PRS are a tool to quantify genetic risk for a heritable disease or trait and may be used to predict future health outcomes. In the United Kingdom (UK), they are often cited as a next-in-line public health tool to be implemented, and their use in consumer genetic testing as well as patient-facing settings is increasing. Despite their potential clinical utility, broader themes about how they might influence an individual's perception of disease risk and decision-making are an active area of research; however, this has mostly been in the setting of return of results to patients. We worked with a youth theatre group and patients involved in a PPIE group to develop two short plays about public perceptions of genetic risk information that could be captured by PRS. These plays were shared in a workshop with patients/members of the public to facilitate discussions about PRS and their perceived benefits, concerns and emotional reactions. Discussions with both performers and patients/public raised three key questions: (1) can the data be trusted?; (2) does knowing genetic risk actually help the patient?; and (3) what makes a life worthwhile? Creating and watching fictional narratives helped all participants explore the potential use of PRS in a clinical setting, informing future research considerations and improving communication between the researchers and lay members of the PPIE group.

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来源期刊
Journal of Community Genetics
Journal of Community Genetics GENETICS & HEREDITY-
CiteScore
3.30
自引率
5.30%
发文量
54
期刊介绍: The Journal of Community Genetics is an international forum for research in the ever-expanding field of community genetics, the art and science of applying medical genetics to human communities for the benefit of their individuals. Community genetics comprises all activities which identify persons at increased genetic risk and has an interest in assessing this risk, in order to enable those at risk to make informed decisions. Community genetics services thus encompass such activities as genetic screening, registration of genetic conditions in the population, routine preconceptional and prenatal genetic consultations, public education on genetic issues, and public debate on related ethical issues. The Journal of Community Genetics has a multidisciplinary scope. It covers medical genetics, epidemiology, genetics in primary care, public health aspects of genetics, and ethical, legal, social and economic issues. Its intention is to serve as a forum for community genetics worldwide, with a focus on low- and middle-income countries. The journal features original research papers, reviews, short communications, program reports, news, and correspondence. Program reports describe illustrative projects in the field of community genetics, e.g., design and progress of an educational program or the protocol and achievement of a gene bank. Case reports describing individual patients are not accepted.
期刊最新文献
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