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Perceptions of ‘Precision’ and ‘Personalised’ Medicine in Singapore and Associated Ethical Issues

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...

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Autores principales: Ong, Serene, Ling, Jeffrey, Ballantyne, Angela, Lysaght, Tamra, Xafis, Vicki
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Springer Singapore 2021
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8079483/
https://www.ncbi.nlm.nih.gov/pubmed/33959200
http://dx.doi.org/10.1007/s41649-021-00165-3
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author Ong, Serene
Ling, Jeffrey
Ballantyne, Angela
Lysaght, Tamra
Xafis, Vicki
author_facet Ong, Serene
Ling, Jeffrey
Ballantyne, Angela
Lysaght, Tamra
Xafis, Vicki
author_sort Ong, Serene
collection PubMed
description 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.
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spelling pubmed-80794832021-05-05 Perceptions of ‘Precision’ and ‘Personalised’ Medicine in Singapore and Associated Ethical Issues Ong, Serene Ling, Jeffrey Ballantyne, Angela Lysaght, Tamra Xafis, Vicki Asian Bioeth Rev Original Paper 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. Springer Singapore 2021-03-20 /pmc/articles/PMC8079483/ /pubmed/33959200 http://dx.doi.org/10.1007/s41649-021-00165-3 Text en © The Author(s) 2021 https://creativecommons.org/licenses/by/4.0/Open Access This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/ (https://creativecommons.org/licenses/by/4.0/) .
spellingShingle Original Paper
Ong, Serene
Ling, Jeffrey
Ballantyne, Angela
Lysaght, Tamra
Xafis, Vicki
Perceptions of ‘Precision’ and ‘Personalised’ Medicine in Singapore and Associated Ethical Issues
title Perceptions of ‘Precision’ and ‘Personalised’ Medicine in Singapore and Associated Ethical Issues
title_full Perceptions of ‘Precision’ and ‘Personalised’ Medicine in Singapore and Associated Ethical Issues
title_fullStr Perceptions of ‘Precision’ and ‘Personalised’ Medicine in Singapore and Associated Ethical Issues
title_full_unstemmed Perceptions of ‘Precision’ and ‘Personalised’ Medicine in Singapore and Associated Ethical Issues
title_short Perceptions of ‘Precision’ and ‘Personalised’ Medicine in Singapore and Associated Ethical Issues
title_sort perceptions of ‘precision’ and ‘personalised’ medicine in singapore and associated ethical issues
topic Original Paper
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8079483/
https://www.ncbi.nlm.nih.gov/pubmed/33959200
http://dx.doi.org/10.1007/s41649-021-00165-3
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