Author:
Mason Amy M.,Obi Ifunanya,Ayodele Olamide,Lambert Samuel A.,Fahle Sarah
Abstract
AbstractThe 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.
Publisher
Springer Science and Business Media LLC
Subject
Genetics (clinical),Public Health, Environmental and Occupational Health,Epidemiology
Reference36 articles.
1. Adeyemo A, Balaconis MK, Darnes DR, Fatumo S, Granados Moreno P, Hodonsky CJ et al (2021) Responsible use of polygenic risk scores in the clinic: potential benefits, risks and gaps. Nat Med 27(11):1876–1884. https://doi.org/10.1038/s41591-021-01549-6
2. Alderwick H, Dixon J (2019) The NHS long term plan. BMJ 7:364–I84. https://doi.org/10.1136/bmj.l84
3. Baker JP, Goodboy AK, Bowman N, Wright AA (2018) Does teaching with PowerPoint increase students’ learning? A meta-analysis. Comput Educ 126:376–387. https://doi.org/10.1016/j.compedu.2018.08.003
4. Bridgen T (2021) Implementing polygenic scores for cardiovascular disease into NHS health checks. PHG Found https://www.phgfoundation.org/report/prs-implementation-and-delivery. Accessed 23 June 2022
5. British Heart Foundation (2017) Finding genes that cause heart disease. https://www.youtube.com/watch?v=H-6WIztq7SQ. Accessed 24 June 2022
Cited by
1 articles.
订阅此论文施引文献
订阅此论文施引文献,注册后可以免费订阅5篇论文的施引文献,订阅后可以查看论文全部施引文献