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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...
Autores principales: | , , |
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Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
JMIR Publications
2020
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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. |
format | Online Article Text |
id | pubmed-7290498 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2020 |
publisher | JMIR Publications |
record_format | MEDLINE/PubMed |
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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