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台湾生物银行:在大数据时代实现跨数据库融合

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

机构信息

National Taiwan University of Science and Technology, No. 43, Keelung Rd., Sec. 4, Dayan District, Taipei, Taiwan 10607 (ROC).

Institute of Law for Science and Technology National Tsing Hua University, No. 101, Sec. 2, Kuang-Fu Rd., Hsinchu, Taiwan 30013 (ROC).

出版信息

Gigascience. 2018 Jan 1;7(1):1-4. doi: 10.1093/gigascience/gix110.

Abstract

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.

摘要

台湾生物银行(TWB)是一个包含 20 万名参与者的活检数据的生物医学研究数据库。该数据库已向参与开发精准医学的研究团体开放;然而,这引发了围绕 TWB 访问电子病历(EMR)的问题。台湾的《个人资料保护法》限制了出于患者原始同意书未涵盖的目的访问 EMR。本评论探讨了可能的法律解决方案,以帮助确保 TWB 访问 EMR 符合法律义务,并符合与伦理、法律和社会影响相关的治理框架。我们建议利用“哈希函数”算法为 EMR 的交叉传输和/或链接创建非回溯性、匿名化的数据。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/b191/5774504/15d3a878ed47/gix110fig1.jpg

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