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

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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.

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Global implementation of genomic medicine: We are not alone

T A Manolio, M Abramowicz, F Al-Mulla … (2015)

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Extracting research-quality phenotypes from electronic health records to support precision medicine

Wei-Qi Wei, Joshua C Denny (2015)

The convergence of two rapidly developing technologies - high-throughput genotyping and electronic health records (EHRs) - gives scientists an unprecedented opportunity to utilize routine healthcare data to accelerate genomic discovery. Institutions and healthcare systems have been building EHR-linked DNA biobanks to enable such a vision. However, the precise extraction of detailed disease and drug-response phenotype information hidden in EHRs is not an easy task. EHR-based studies have successfully replicated known associations, made new discoveries for diseases and drug response traits, rapidly contributed cases and controls to large meta-analyses, and demonstrated the potential of EHRs for broad-based phenome-wide association studies. In this review, we summarize the advantages and challenges of repurposing EHR data for genetic research. We also highlight recent notable studies and novel approaches to provide an overview of advanced EHR-based phenotyping. Electronic supplementary material The online version of this article (doi:10.1186/s13073-015-0166-y) contains supplementary material, which is available to authorized users.

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Has the biobank bubble burst? Withstanding the challenges for sustainable biobanking in the digital era

Don Chalmers, Dianne Nicol, Jane Kaye … (2016)

Biobanks have been heralded as essential tools for translating biomedical research into practice, driving precision medicine to improve pathways for global healthcare treatment and services. Many nations have established specific governance systems to facilitate research and to address the complex ethical, legal and social challenges that they present, but this has not lead to uniformity across the world. Despite significant progress in responding to the ethical, legal and social implications of biobanking, operational, sustainability and funding challenges continue to emerge. No coherent strategy has yet been identified for addressing them. This has brought into question the overall viability and usefulness of biobanks in light of the significant resources required to keep them running. This review sets out the challenges that the biobanking community has had to overcome since their inception in the early 2000s. The first section provides a brief outline of the diversity in biobank and regulatory architecture in seven countries: Australia, Germany, Japan, Singapore, Taiwan, the UK, and the USA. The article then discusses four waves of responses to biobanking challenges. This article had its genesis in a discussion on biobanks during the Centre for Health, Law and Emerging Technologies (HeLEX) conference in Oxford UK, co-sponsored by the Centre for Law and Genetics (University of Tasmania). This article aims to provide a review of the issues associated with biobank practices and governance, with a view to informing the future course of both large-scale and smaller scale biobanks.

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Author and article information

Journal

Journal ID (nlm-ta): Gigascience

Journal ID (iso-abbrev): Gigascience

Journal ID (publisher-id): gigascience

Title: GigaScience

Publisher: Oxford University Press

ISSN (Electronic): 2047-217X

Publication date Collection: January 2018

Publication date (Electronic): 15 November 2017

Publication date PMC-release: 15 November 2017

Volume: 7

Issue: 1

Pages: 1-4

Affiliations

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)

Saint Island International Patent & Law Offices, 11F-1, No. 248, Sec. 3, Nanking E. Rd., Taipei, Taiwan 10595

Author notes

Correspondence address. Jui-Chu Lin, College of Humanities and Social Sciences, National Taiwan University of Science and Technology, No. 43, Keelung Road, Sec. 4, Da’an District, Taipei 10607, Taiwan. Tel: +886-2-27301030; Fax: +886-2-27376288; E-mail: 1030@ 123456mail.ntust.edu.tw

Article

Publisher ID: gix110

DOI: 10.1093/gigascience/gix110

PMC ID: 5774504

PubMed ID: 29149267

License:

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.

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

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Karger: Digital Health

Most cited references 4

Global implementation of genomic medicine: We are not alone

Extracting research-quality phenotypes from electronic health records to support precision medicine

Has the biobank bubble burst? Withstanding the challenges for sustainable biobanking in the digital era

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