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

Taiwan Biobank: making cross-database convergence possible in the Big Data era.
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台湾生物库:使大数据时代成为可能的跨数据库融合。

DOI:
10.1093/gigascience/gix110
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发表时间:
2018-01-01
期刊:
影响因子:
9.2
通讯作者:
Chen YS
Chen YS
中科院分区:
生物学2区
文献类型:
--
作者:
Lin JC;Fan CT;Liao CC;Chen YS

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台湾生物样本库(Taiwan Biobank,TWB)是一个生物医学研究数据库,收集了20万名参与者的活检数据。参与精准药物开发的研究界已获准访问该数据库;然而,这引发了围绕TWB访问电子病历(EMR)的问题。台湾《个人数据保护法》限制出于患者原始同意书未涵盖的目的访问电子病历。本评论探讨了可能的法律的解决方案,以帮助确保TWB对EMR的访问符合法律的义务,以及与伦理、法律的和社会影响相关的治理框架。我们建议利用“哈希函数”算法来创建非追溯性的匿名数据,以实现与EMR的交叉传输和/或链接。
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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