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Genetic data are not always personal—disaggregating the identifiability and sensitivity of genetic data

In both the EU and USA, genetic data are recognized as a special category of data that requires heightened privacy protection. Identifiability and sensitivity are central pillars of the regulatory framework in both jurisdictions: the privacy concerns stem from the assumption that genetic data are ca...

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Autor principal: Rahnasto, Johanna
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Oxford University Press 2023
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10676748/
https://www.ncbi.nlm.nih.gov/pubmed/38023689
http://dx.doi.org/10.1093/jlb/lsad029
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author Rahnasto, Johanna
author_facet Rahnasto, Johanna
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description In both the EU and USA, genetic data are recognized as a special category of data that requires heightened privacy protection. Identifiability and sensitivity are central pillars of the regulatory framework in both jurisdictions: the privacy concerns stem from the assumption that genetic data are capable of identifying the individual and reveals sensitive information about them. But not all genetic data are identifiable and sensitive, nor are genetic data necessarily different from other types of big data in terms of these issues. This article argues that a more nuanced approach is needed to assess the threat to privacy interests posed by uses of genetic data. The privacy interests involved should be distinguished in terms of proposed use, the amount of data in question, and its uniqueness and informational content. When these factors are disaggregated, it is clear that both regulatory schemes could better achieve their goals by focusing more on the ways genetic data can be used rather than on their status as a special category of data.
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spelling pubmed-106767482023-07-24 Genetic data are not always personal—disaggregating the identifiability and sensitivity of genetic data Rahnasto, Johanna J Law Biosci Original Article In both the EU and USA, genetic data are recognized as a special category of data that requires heightened privacy protection. Identifiability and sensitivity are central pillars of the regulatory framework in both jurisdictions: the privacy concerns stem from the assumption that genetic data are capable of identifying the individual and reveals sensitive information about them. But not all genetic data are identifiable and sensitive, nor are genetic data necessarily different from other types of big data in terms of these issues. This article argues that a more nuanced approach is needed to assess the threat to privacy interests posed by uses of genetic data. The privacy interests involved should be distinguished in terms of proposed use, the amount of data in question, and its uniqueness and informational content. When these factors are disaggregated, it is clear that both regulatory schemes could better achieve their goals by focusing more on the ways genetic data can be used rather than on their status as a special category of data. Oxford University Press 2023-07-24 /pmc/articles/PMC10676748/ /pubmed/38023689 http://dx.doi.org/10.1093/jlb/lsad029 Text en © The Author(s) 2023. Published by Oxford University Press on behalf of Duke University School of Law, Harvard Law School, Oxford University Press, and Stanford Law School. https://creativecommons.org/licenses/by-nc-nd/4.0/This is an Open Access article distributed under the terms of the Creative Commons Attribution NonCommercial-NoDerivs licence (https://creativecommons.org/licenses/by-nc-nd/4.0/), which permits non-commercial reproduction and distribution of the work, in any medium, provided the original work is not altered or transformed in any way, and that the work properly cited. For commercial re-use, please contact journals.permissions@oup.com
spellingShingle Original Article
Rahnasto, Johanna
Genetic data are not always personal—disaggregating the identifiability and sensitivity of genetic data
title Genetic data are not always personal—disaggregating the identifiability and sensitivity of genetic data
title_full Genetic data are not always personal—disaggregating the identifiability and sensitivity of genetic data
title_fullStr Genetic data are not always personal—disaggregating the identifiability and sensitivity of genetic data
title_full_unstemmed Genetic data are not always personal—disaggregating the identifiability and sensitivity of genetic data
title_short Genetic data are not always personal—disaggregating the identifiability and sensitivity of genetic data
title_sort genetic data are not always personal—disaggregating the identifiability and sensitivity of genetic data
topic Original Article
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10676748/
https://www.ncbi.nlm.nih.gov/pubmed/38023689
http://dx.doi.org/10.1093/jlb/lsad029
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