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A principled approach to cross‐sector genomic data access

Genomic data is growing in importance as scientific knowledge and technology develop, and in availability, as direct‐to‐consumer genomic health testing and recreational genealogy services become more widely utilized. Access to genomic data needs to be considered in light of individual privacy. Cross...

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Detalles Bibliográficos
Autores principales: Smith, Marcus, Miller, Seumas
Formato: Online Artículo Texto
Lenguaje:English
Publicado: John Wiley and Sons Inc. 2021
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8518050/
https://www.ncbi.nlm.nih.gov/pubmed/34251674
http://dx.doi.org/10.1111/bioe.12919
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author Smith, Marcus
Miller, Seumas
author_facet Smith, Marcus
Miller, Seumas
author_sort Smith, Marcus
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description Genomic data is growing in importance as scientific knowledge and technology develop, and in availability, as direct‐to‐consumer genomic health testing and recreational genealogy services become more widely utilized. Access to genomic data needs to be considered in light of individual privacy. Cross‐sector use of genomic health and ancestry data, and by law enforcement in particular, raises ethical questions and requires appropriate regulation. This article discusses the significance of genomic data and focuses on investigative genetic genealogy, namely the use of genomic health and ancestry data to advance law enforcement, as an example of cross‐sector use. An ethical framework is developed that contributes to a more principled approach to genomic data access.
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spelling pubmed-85180502021-10-21 A principled approach to cross‐sector genomic data access Smith, Marcus Miller, Seumas Bioethics Original Articles Genomic data is growing in importance as scientific knowledge and technology develop, and in availability, as direct‐to‐consumer genomic health testing and recreational genealogy services become more widely utilized. Access to genomic data needs to be considered in light of individual privacy. Cross‐sector use of genomic health and ancestry data, and by law enforcement in particular, raises ethical questions and requires appropriate regulation. This article discusses the significance of genomic data and focuses on investigative genetic genealogy, namely the use of genomic health and ancestry data to advance law enforcement, as an example of cross‐sector use. An ethical framework is developed that contributes to a more principled approach to genomic data access. John Wiley and Sons Inc. 2021-07-12 2021-10 /pmc/articles/PMC8518050/ /pubmed/34251674 http://dx.doi.org/10.1111/bioe.12919 Text en © 2021 The Authors. Bioethics published by John Wiley & Sons Ltd. https://creativecommons.org/licenses/by-nc-nd/4.0/This is an open access article under the terms of the http://creativecommons.org/licenses/by-nc-nd/4.0/ (https://creativecommons.org/licenses/by-nc-nd/4.0/) License, which permits use and distribution in any medium, provided the original work is properly cited, the use is non‐commercial and no modifications or adaptations are made.
spellingShingle Original Articles
Smith, Marcus
Miller, Seumas
A principled approach to cross‐sector genomic data access
title A principled approach to cross‐sector genomic data access
title_full A principled approach to cross‐sector genomic data access
title_fullStr A principled approach to cross‐sector genomic data access
title_full_unstemmed A principled approach to cross‐sector genomic data access
title_short A principled approach to cross‐sector genomic data access
title_sort principled approach to cross‐sector genomic data access
topic Original Articles
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8518050/
https://www.ncbi.nlm.nih.gov/pubmed/34251674
http://dx.doi.org/10.1111/bioe.12919
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