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All Our Data Will Be Health Data One Day: The Need for Universal Data Protection and Comprehensive Consent

Tremendous growth in the types of data that are collected and their interlinkage are enabling more predictions of individuals’ behavior, health status, and diseases. Legislation in many countries treats health-related data as a special sensitive kind of data. Today’s massive linkage of data, however...

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Detalles Bibliográficos
Autores principales: Schneble, Christophe Olivier, Elger, Bernice Simone, Shaw, David Martin
Formato: Online Artículo Texto
Lenguaje:English
Publicado: JMIR Publications 2020
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7290498/
https://www.ncbi.nlm.nih.gov/pubmed/32463372
http://dx.doi.org/10.2196/16879
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author Schneble, Christophe Olivier
Elger, Bernice Simone
Shaw, David Martin
author_facet Schneble, Christophe Olivier
Elger, Bernice Simone
Shaw, David Martin
author_sort Schneble, Christophe Olivier
collection PubMed
description Tremendous growth in the types of data that are collected and their interlinkage are enabling more predictions of individuals’ behavior, health status, and diseases. Legislation in many countries treats health-related data as a special sensitive kind of data. Today’s massive linkage of data, however, could transform “nonhealth” data into sensitive health data. In this paper, we argue that the notion of health data should be broadened and should also take into account past and future health data and indirect, inferred, and invisible health data. We also lay out the ethical and legal implications of our model.
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spelling pubmed-72904982020-06-19 All Our Data Will Be Health Data One Day: The Need for Universal Data Protection and Comprehensive Consent Schneble, Christophe Olivier Elger, Bernice Simone Shaw, David Martin J Med Internet Res Viewpoint Tremendous growth in the types of data that are collected and their interlinkage are enabling more predictions of individuals’ behavior, health status, and diseases. Legislation in many countries treats health-related data as a special sensitive kind of data. Today’s massive linkage of data, however, could transform “nonhealth” data into sensitive health data. In this paper, we argue that the notion of health data should be broadened and should also take into account past and future health data and indirect, inferred, and invisible health data. We also lay out the ethical and legal implications of our model. JMIR Publications 2020-05-28 /pmc/articles/PMC7290498/ /pubmed/32463372 http://dx.doi.org/10.2196/16879 Text en ©Christophe Olivier Schneble, Bernice Simone Elger, David Martin Shaw. Originally published in the Journal of Medical Internet Research (http://www.jmir.org), 28.05.2020. https://creativecommons.org/licenses/by/4.0/ This is an open-access article distributed under the terms of the Creative Commons Attribution License (https://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work, first published in the Journal of Medical Internet Research, is properly cited. The complete bibliographic information, a link to the original publication on http://www.jmir.org/, as well as this copyright and license information must be included.
spellingShingle Viewpoint
Schneble, Christophe Olivier
Elger, Bernice Simone
Shaw, David Martin
All Our Data Will Be Health Data One Day: The Need for Universal Data Protection and Comprehensive Consent
title All Our Data Will Be Health Data One Day: The Need for Universal Data Protection and Comprehensive Consent
title_full All Our Data Will Be Health Data One Day: The Need for Universal Data Protection and Comprehensive Consent
title_fullStr All Our Data Will Be Health Data One Day: The Need for Universal Data Protection and Comprehensive Consent
title_full_unstemmed All Our Data Will Be Health Data One Day: The Need for Universal Data Protection and Comprehensive Consent
title_short All Our Data Will Be Health Data One Day: The Need for Universal Data Protection and Comprehensive Consent
title_sort all our data will be health data one day: the need for universal data protection and comprehensive consent
topic Viewpoint
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7290498/
https://www.ncbi.nlm.nih.gov/pubmed/32463372
http://dx.doi.org/10.2196/16879
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