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

Chalmers, Don ; Nicol, Dianne ; Kaye, Jane ; Bell, Jessica ; Campbell, Alastair V. ; Ho, Calvin W. L. ; Kato, Kazuto ; Minari, Jusaku ; Ho, Chih-hsing ; Mitchell, Colin ; Molnár-Gábor, Fruzsina ; Otlowski, Margaret ; Thiel, Daniel ; Fullerton, Stephanie M. ; Whitton, Tess

In: BMC Medical Ethics, 17 (2016), Nr. 39. pp. 1-14. ISSN 1472-6939

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Download (602kB) | Lizenz: Creative Commons LizenzvertragHas the biobank bubble burst? Withstanding the challenges for sustainable biobanking in the digital era by Chalmers, Don ; Nicol, Dianne ; Kaye, Jane ; Bell, Jessica ; Campbell, Alastair V. ; Ho, Calvin W. L. ; Kato, Kazuto ; Minari, Jusaku ; Ho, Chih-hsing ; Mitchell, Colin ; Molnár-Gábor, Fruzsina ; Otlowski, Margaret ; Thiel, Daniel ; Fullerton, Stephanie M. ; Whitton, Tess underlies the terms of Creative Commons Attribution 3.0 Germany

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Abstract

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.

Item Type: Article
Journal or Publication Title: BMC Medical Ethics
Volume: 17
Number: 39
Publisher: BioMed Central
Place of Publication: London
Date Deposited: 20 Jul 2016 11:18
Date: 2016
ISSN: 1472-6939
Page Range: pp. 1-14
Faculties / Institutes: Service facilities > Heidelberger Akademie der Wissenschaften
Subjects: 000 Generalities, Science
610 Medical sciences Medicine
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