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Immortal data: a qualitative exploration of patients’ understandings of genomic data

As ambitions to ‘mainstream’ genetic and genomic medicine in the UK advance, patients are increasingly exposed to information about genomic data. Unlike the results of many other medical investigations which are linked to the time of sample collection, genomic testing provides immortal data that do...

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Autores principales: Lyle, Kate, Weller, Susie, Horton, Rachel, Lucassen, Anneke
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Springer International Publishing 2023
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10250296/
https://www.ncbi.nlm.nih.gov/pubmed/37002328
http://dx.doi.org/10.1038/s41431-023-01325-9
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author Lyle, Kate
Weller, Susie
Horton, Rachel
Lucassen, Anneke
author_facet Lyle, Kate
Weller, Susie
Horton, Rachel
Lucassen, Anneke
author_sort Lyle, Kate
collection PubMed
description As ambitions to ‘mainstream’ genetic and genomic medicine in the UK advance, patients are increasingly exposed to information about genomic data. Unlike the results of many other medical investigations which are linked to the time of sample collection, genomic testing provides immortal data that do not change across time, and may have relevance for relatives and generations far beyond the patient’s own lifespan. This immortality raises new ethical challenges for healthcare professionals, patients and families alike, such as ensuring consent for possible future interpretations; determining when genomic data are best sought (at birth, on illness etc) and reinterpreted; and balancing the confidentiality of patients and duties of care towards others. This paper reports on qualitative work exploring the perspectives of patients and relatives participating in genomic testing, and suggests that their engagements with this immortality are shaped by: the contrast between the simplicity of sample provision and information gathered; understandings of heritability; and notions of genomic data as a collective resource. We discuss the implications this holds for practice and argue that the immortality of genomic data must take a more prominent position in patient and healthcare professional interactions.
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spelling pubmed-102502962023-06-10 Immortal data: a qualitative exploration of patients’ understandings of genomic data Lyle, Kate Weller, Susie Horton, Rachel Lucassen, Anneke Eur J Hum Genet Article As ambitions to ‘mainstream’ genetic and genomic medicine in the UK advance, patients are increasingly exposed to information about genomic data. Unlike the results of many other medical investigations which are linked to the time of sample collection, genomic testing provides immortal data that do not change across time, and may have relevance for relatives and generations far beyond the patient’s own lifespan. This immortality raises new ethical challenges for healthcare professionals, patients and families alike, such as ensuring consent for possible future interpretations; determining when genomic data are best sought (at birth, on illness etc) and reinterpreted; and balancing the confidentiality of patients and duties of care towards others. This paper reports on qualitative work exploring the perspectives of patients and relatives participating in genomic testing, and suggests that their engagements with this immortality are shaped by: the contrast between the simplicity of sample provision and information gathered; understandings of heritability; and notions of genomic data as a collective resource. We discuss the implications this holds for practice and argue that the immortality of genomic data must take a more prominent position in patient and healthcare professional interactions. Springer International Publishing 2023-03-31 2023-06 /pmc/articles/PMC10250296/ /pubmed/37002328 http://dx.doi.org/10.1038/s41431-023-01325-9 Text en © The Author(s) 2023 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
Lyle, Kate
Weller, Susie
Horton, Rachel
Lucassen, Anneke
Immortal data: a qualitative exploration of patients’ understandings of genomic data
title Immortal data: a qualitative exploration of patients’ understandings of genomic data
title_full Immortal data: a qualitative exploration of patients’ understandings of genomic data
title_fullStr Immortal data: a qualitative exploration of patients’ understandings of genomic data
title_full_unstemmed Immortal data: a qualitative exploration of patients’ understandings of genomic data
title_short Immortal data: a qualitative exploration of patients’ understandings of genomic data
title_sort immortal data: a qualitative exploration of patients’ understandings of genomic data
topic Article
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10250296/
https://www.ncbi.nlm.nih.gov/pubmed/37002328
http://dx.doi.org/10.1038/s41431-023-01325-9
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