Public engagement with genomic medicine: a summary of town hall discussions
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ORIGINAL ARTICLE
Public engagement with genomic medicine: a summary of town hall discussions Holly Etchegary 1
&
Mercy Winsor 2 & Angela Power 3 & Charlene Simmonds 2
Received: 11 June 2020 / Accepted: 27 August 2020 # Springer-Verlag GmbH Germany, part of Springer Nature 2020
Abstract Engaging with the public for their input about genomic medicine is critical before it is implemented into routine healthcare practice. In order to inform discussion and planning for the introduction of genome sequencing into clinical care in an Eastern Canadian province, we implemented a program of public engagement activities. Here, we report a qualitative summary of two town hall discussions utilizing a hybrid information–consultation approach with 20 residents of the province of Newfoundland and Labrador, Canada. Discussion revealed largely positive attitudes towards genomic medicine; however, critical reflection around informed consent models, the return of sequencing findings, and access to qualified healthcare professionals revealed numerous public concerns. Public support will be important to realize the potential benefits of genomics and precision medicine to health outcomes. Our findings highlight public concerns that must be addressed in educational and informed consent documents related to sequencing. Town hall attendees endorsed ongoing public education and awareness-building initiatives which could help foster transparency and trust as genomics is integrated into healthcare systems. Keywords Public engagement . Genomics . Sequencing . Personalized medicine . Consultation . Qualitative
Introduction Personalized medicine approaches have the potential for improving health. Examples include in the diagnosis and treatment of rare diseases (Yang et al. 2013; Jacob et al. 2013; Green and Biesecker 2014) and pharmacogenomic testing to guide therapeutic decisions in oncology and other clinical
* Holly Etchegary [email protected] Mercy Winsor [email protected] Angela Power [email protected] Charlene Simmonds [email protected] 1
Faculty of Medicine, Craig Dobbin Centre for Genetics, Memorial University, St. John’s, NL A1B 3V6, Canada
2
Health Research Unit, Faculty of Medicine, Craig Dobbin Centre for Genetics, Memorial University, St. John’s, NL A1B 3V6, Canada
3
Newfoundland and Labrador Centre for Health Information, St. John’s, NL A1B 2C7, Canada
areas (Pulley et al. 2012; Manolio et al. 2013; Gottesman et al. 2013; Rosenman et al. 2017). Practice guidelines for genomic applications continue to emerge. For example, pharmacogenomic drug therapy guidelines are now available (Gottesman et al. 2013; Rosenman et al. 2017; Crosslin et al. 2015). The American College of Medical Genetics and Genomics (ACMG) recommended a list of 56 actionable genes (revised to 59) to be analysed for disease risk variants, including those unrelated to the initial indication for testing (Kalia et al. 2017; Green et al. 2013). As the cost of sequencing decreases, whole exome or genome approaches will likely
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