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

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      GigaScience

      Oxford University Press

      EMR, biobank, precision medicine, linkage

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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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          Most cited references 4

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          Global implementation of genomic medicine: We are not alone

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

            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

              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
                Gigascience
                Gigascience
                gigascience
                GigaScience
                Oxford University Press
                2047-217X
                January 2018
                15 November 2017
                15 November 2017
                : 7
                : 1
                : 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
                gix110
                10.1093/gigascience/gix110
                5774504
                29149267
                © The Author(s) 2017. Published by Oxford University Press.

                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.

                Page count
                Pages: 4
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                Commentaries

                linkage, precision medicine, biobank, emr

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