Hunter, A;
Lewis, C;
Hill, M;
Chitty, LS;
Leeson-Beevers, K;
McInnes-Dean, H;
Harvey, K;
... Thomson, K; + view all
(2023)
Public and patient involvement in research to support genome services development in the UK.
Journal of Translational Genetics and Genomics
, 7
pp. 17-26.
10.20517/jtgg.2022.19.
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Abstract
Public and patient involvement (PPI) - the collaboration in research with members of the public and patients with relevant experience - is becoming well established in health service research in the UK. It is supported by funders and academic institutions. Published principles and guidelines for researchers, developed through consultation and consensus building, are available. Meanwhile, as genome sequencing is adopted into routine health care, translational genomics research and research to evaluate new genomic services are growing. Given the ethical and social implications of offering genome sequencing within a national health service, it is important that researchers give full consideration to planning and implementing meaningful PPI. Here we present five case studies of PPI in a variety of clinical genomic studies, including commentary on positive impacts and suggestions for improvements. We call for funders and academic institutions to continue and increase their efforts to enable and promote PPI across genomic and other health service research.
Type: | Article |
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Title: | Public and patient involvement in research to support genome services development in the UK |
Open access status: | An open access version is available from UCL Discovery |
DOI: | 10.20517/jtgg.2022.19 |
Publisher version: | https://doi.org/10.20517/jtgg.2022.19 |
Language: | English |
Additional information: | © The Author(s) 2023. Open Access This article is licensed under a Creative Commons Attribution 4.0 International License (https://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, sharing, adaptation, distribution and reproduction in any medium or format, for any purpose, even commercially, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. |
Keywords: | PPI, patient involvement, genome sequencing, health service research |
UCL classification: | UCL UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Population Health Sciences > UCL GOS Institute of Child Health UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Population Health Sciences > UCL GOS Institute of Child Health > Genetics and Genomic Medicine Dept UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Population Health Sciences > UCL GOS Institute of Child Health > Population, Policy and Practice Dept |
URI: | https://discovery.ucl.ac.uk/id/eprint/10166166 |
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