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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.

Published version
Peer-reviewed

Type

Article

Change log

Authors

Mason, Amy M 
Obi, Ifunanya 
Ayodele, Olamide 
Lambert, Samuel A 
Fahle, Sarah 

Abstract

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.

Description

Keywords

31 Biological Sciences, 3105 Genetics, Behavioral and Social Science, Basic Behavioral and Social Science, Clinical Research, Prevention, 3 Good Health and Well Being

Journal Title

J Community Genet

Conference Name

Journal ISSN

1868-310X
1868-6001

Volume Title

Publisher

Springer Science and Business Media LLC
Sponsorship
British Heart Foundation (RG/18/13/33946)
National Institute for Health and Care Research (IS-BRC-1215-20014)
Department of Health (via National Institute for Health Research (NIHR)) (NIHR203337)
British Heart Foundation (None)