Taiwan Biobank: making cross-database convergence possible in the Big Data era

The Taiwan Biobank (TWB) is a biomedical research database of biopsy data from 200 000 participants. Access to this database has been granted to research communities taking part in the development of precision medicines; however, this has raised issues surrounding TWB’s access to electronic medical...

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Autores principales: Lin, Jui-Chu, Fan, Chien-Te, Liao, Chia-Cheng, Chen, Yao-Sheng
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Oxford University Press 2017
Materias:
Commentaries
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5774504/
https://www.ncbi.nlm.nih.gov/pubmed/29149267
http://dx.doi.org/10.1093/gigascience/gix110
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author Lin, Jui-Chu
Fan, Chien-Te
Liao, Chia-Cheng
Chen, Yao-Sheng
author_facet Lin, Jui-Chu
Fan, Chien-Te
Liao, Chia-Cheng
Chen, Yao-Sheng
author_sort Lin, Jui-Chu
collection PubMed
description The Taiwan Biobank (TWB) is a biomedical research database of biopsy data from 200 000 participants. Access to this database has been granted to research communities taking part in the development of precision medicines; however, this has raised issues surrounding TWB’s access to electronic medical records (EMRs). The Personal Data Protection Act of Taiwan restricts access to EMRs for purposes not covered by patients’ original consent. This commentary explores possible legal solutions to help ensure that the access TWB has to EMR abides with legal obligations, and with governance frameworks associated with ethical, legal, and social implications. We suggest utilizing “hash function” algorithms to create nonretrospective, anonymized data for the purpose of cross-transmission and/or linkage with EMR.
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spelling pubmed-57745042018-01-24 Taiwan Biobank: making cross-database convergence possible in the Big Data era Lin, Jui-Chu Fan, Chien-Te Liao, Chia-Cheng Chen, Yao-Sheng Gigascience Commentaries The Taiwan Biobank (TWB) is a biomedical research database of biopsy data from 200 000 participants. Access to this database has been granted to research communities taking part in the development of precision medicines; however, this has raised issues surrounding TWB’s access to electronic medical records (EMRs). The Personal Data Protection Act of Taiwan restricts access to EMRs for purposes not covered by patients’ original consent. This commentary explores possible legal solutions to help ensure that the access TWB has to EMR abides with legal obligations, and with governance frameworks associated with ethical, legal, and social implications. We suggest utilizing “hash function” algorithms to create nonretrospective, anonymized data for the purpose of cross-transmission and/or linkage with EMR. Oxford University Press 2017-11-15 /pmc/articles/PMC5774504/ /pubmed/29149267 http://dx.doi.org/10.1093/gigascience/gix110 Text en © The Author(s) 2017. Published by Oxford University Press. http://creativecommons.org/licenses/by/4.0/ This is an Open Access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted reuse, distribution, and reproduction in any medium, provided the original work is properly cited.
spellingShingle Commentaries
Lin, Jui-Chu
Fan, Chien-Te
Liao, Chia-Cheng
Chen, Yao-Sheng
Taiwan Biobank: making cross-database convergence possible in the Big Data era
title Taiwan Biobank: making cross-database convergence possible in the Big Data era
title_full Taiwan Biobank: making cross-database convergence possible in the Big Data era
title_fullStr Taiwan Biobank: making cross-database convergence possible in the Big Data era
title_full_unstemmed Taiwan Biobank: making cross-database convergence possible in the Big Data era
title_short Taiwan Biobank: making cross-database convergence possible in the Big Data era
title_sort taiwan biobank: making cross-database convergence possible in the big data era
topic Commentaries
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5774504/
https://www.ncbi.nlm.nih.gov/pubmed/29149267
http://dx.doi.org/10.1093/gigascience/gix110
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