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Genomic health data generation in the UK: a 360 view
In the UK, genomic health data is being generated in three major contexts: the healthcare system (based on clinical indication), in large scale research programmes, and for purchasers of direct-to-consumer genetic tests. The recently delivered hybrid clinical/research programme, 100,000 Genomes Proj...
Autores principales: | , , , |
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Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
Springer International Publishing
2021
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Materias: | |
Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8523282/ https://www.ncbi.nlm.nih.gov/pubmed/34663916 http://dx.doi.org/10.1038/s41431-021-00976-w |
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author | Ormondroyd, Elizabeth Border, Peter Hayward, Judith Papanikitas, Andrew |
author_facet | Ormondroyd, Elizabeth Border, Peter Hayward, Judith Papanikitas, Andrew |
author_sort | Ormondroyd, Elizabeth |
collection | PubMed |
description | In the UK, genomic health data is being generated in three major contexts: the healthcare system (based on clinical indication), in large scale research programmes, and for purchasers of direct-to-consumer genetic tests. The recently delivered hybrid clinical/research programme, 100,000 Genomes Project set the scene for a new Genomic Medicine Service, through which the National Health Service aims to deliver consistent and equitable care informed by genomics, while providing data to inform academic and industry research and development. In parallel, a large scale research study, Our Future Health, has UK Government and Industry investment and aims to recruit 5 million volunteers to support research intended to improve early detection, risk stratification, and early intervention for chronic diseases. To explore how current models of genomic health data generation intersect, and to understand clinical, ethical, legal, policy and social issues arising from this intersection, we conducted a series of five multidisciplinary panel discussions attended by 28 invited stakeholders. Meetings were recorded and transcribed. We present a summary of issues identified: genomic test attributes; reasons for generating genomic health data; individuals’ motivation to seek genomic data; health service impacts; role of genetic counseling; equity; data uses and security; consent; governance and regulation. We conclude with some suggestions for policy consideration. |
format | Online Article Text |
id | pubmed-8523282 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2021 |
publisher | Springer International Publishing |
record_format | MEDLINE/PubMed |
spelling | pubmed-85232822021-10-20 Genomic health data generation in the UK: a 360 view Ormondroyd, Elizabeth Border, Peter Hayward, Judith Papanikitas, Andrew Eur J Hum Genet Article In the UK, genomic health data is being generated in three major contexts: the healthcare system (based on clinical indication), in large scale research programmes, and for purchasers of direct-to-consumer genetic tests. The recently delivered hybrid clinical/research programme, 100,000 Genomes Project set the scene for a new Genomic Medicine Service, through which the National Health Service aims to deliver consistent and equitable care informed by genomics, while providing data to inform academic and industry research and development. In parallel, a large scale research study, Our Future Health, has UK Government and Industry investment and aims to recruit 5 million volunteers to support research intended to improve early detection, risk stratification, and early intervention for chronic diseases. To explore how current models of genomic health data generation intersect, and to understand clinical, ethical, legal, policy and social issues arising from this intersection, we conducted a series of five multidisciplinary panel discussions attended by 28 invited stakeholders. Meetings were recorded and transcribed. We present a summary of issues identified: genomic test attributes; reasons for generating genomic health data; individuals’ motivation to seek genomic data; health service impacts; role of genetic counseling; equity; data uses and security; consent; governance and regulation. We conclude with some suggestions for policy consideration. Springer International Publishing 2021-10-19 2022-07 /pmc/articles/PMC8523282/ /pubmed/34663916 http://dx.doi.org/10.1038/s41431-021-00976-w 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 license, and indicate if changes were made. The images or other third party material in this article are included in the article’s Creative Commons license, unless indicated otherwise in a credit line to the material. If material is not included in the article’s Creative Commons license 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 license, visit http://creativecommons.org/licenses/by/4.0/ (https://creativecommons.org/licenses/by/4.0/) . |
spellingShingle | Article Ormondroyd, Elizabeth Border, Peter Hayward, Judith Papanikitas, Andrew Genomic health data generation in the UK: a 360 view |
title | Genomic health data generation in the UK: a 360 view |
title_full | Genomic health data generation in the UK: a 360 view |
title_fullStr | Genomic health data generation in the UK: a 360 view |
title_full_unstemmed | Genomic health data generation in the UK: a 360 view |
title_short | Genomic health data generation in the UK: a 360 view |
title_sort | genomic health data generation in the uk: a 360 view |
topic | Article |
url | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8523282/ https://www.ncbi.nlm.nih.gov/pubmed/34663916 http://dx.doi.org/10.1038/s41431-021-00976-w |
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