Abstract
Governments are investing in precision medicine (PM) with the aim of improving healthcare through the use of genomic analyses and data analytics to develop tailored treatment approaches for individual patients. The success of PM is contingent upon clear public communications that engender trust and secure the social licence to collect and share large population-wide data sets because specific consent for each data re-use is impractical. Variation in the terminology used by different programmes used to describe PM may hinder clear communication and threaten trust. Language is used to create common understanding and expectations regarding precision medicine between researchers, clinicians and the volunteers. There is a need to better understand public interpretations of PM-related terminology. This paper reports on a qualitative study involving 24 focus group participants in the multi-lingual context of Singapore. The study explored how Singaporeans interpret and understand the terms ‘precision medicine’ and ‘personalised medicine’, and which term they felt more aptly communicates the concept and goals of PM. Results suggest that participants were unable to readily link the terms with this area of medicine and initially displayed preferences for the more familiar term of ‘personalised’. The use of visual aids to convey key concepts resonated with participants, some of whom then indicated preferences for the term ‘precision’ as being a more accurate description of PM research. These aids helped to facilitate dialogue around the ethical and social value, as well as the risks, of PM. Implications for programme developers and policy makers are discussed.
Highlights
Precision medicine (PM) aims to improve healthcare with the use of genomic analyses and data analytics to develop tailored approaches to predicting disease progression and treatment responses for individual patients (Marquart et al 2018)
The National Institutes of Health (NIH) in the USA has launched All of US, which seeks to recruit one million volunteers to share genomic samples and data for research (Genetics Home Reference 2020)
Very few participants across the English and Mandarin focus groups said they had heard of ‘precision medicine’ before being invited to the discussions, but more participants were familiar with the term ‘personalised medicine’
Summary
Precision medicine (PM) aims to improve healthcare with the use of genomic analyses and data analytics to develop tailored approaches to predicting disease progression and treatment responses for individual patients (Marquart et al 2018). This data-intensive approach differs from evidence-based medicine, where the knowledge base depends predominantly on evidence from epidemiological studies and clinical trials that reflect the health status and treatment response of specific populations (Goldberger and Buxton 2013). The China Precision Medicine Initiative will receive the equivalent of US$9.2 billion in funding over 15 years (Cyranoski 2016; Jia et al 2015)
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