Literature DB >> 15158057

Governing UK Biobank: the importance of ensuring public trust.

Richard Tutton1, Jane Kaye, Klaus Hoeyer.   

Abstract

In the autumn of 2003, UK Biobank published the first draft of its Ethics and Governance Framework. Subsequently, this document has been available for interested parties to comment on and the UK Biobank Board of Directors is expected to adopt the final version in 2004. Here, we aim to contribute to this process and highlight to a wider audience some of the inconsistencies in the issues of consent, governance and right of withdrawal that emerge from the draft of the Framework. These issues will have implications for securing the public trust and long-term support that the success of the project depends on. Therefore, they must be considered carefully because the UK Biobank will be the first ever genetic database of a general population of this size to become operational, and will be used as a model for other projects of this kind.

Keywords:  Biomedical and Behavioral Research; Genetics and Reproduction

Mesh:

Year:  2004        PMID: 15158057     DOI: 10.1016/j.tibtech.2004.04.007

Source DB:  PubMed          Journal:  Trends Biotechnol        ISSN: 0167-7799            Impact factor:   19.536


  14 in total

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Authors:  Isaac S Kohane
Journal:  Nat Rev Genet       Date:  2011-05-18       Impact factor: 53.242

2.  Meeting the governance challenges of next-generation biorepository research.

Authors:  Stephanie M Fullerton; Nicholas R Anderson; Greg Guzauskas; Dena Freeman; Kelly Fryer-Edwards
Journal:  Sci Transl Med       Date:  2010-01-20       Impact factor: 17.956

Review 3.  Axes of a revolution: challenges and promises of big data in healthcare.

Authors:  Smadar Shilo; Hagai Rossman; Eran Segal
Journal:  Nat Med       Date:  2020-01-13       Impact factor: 53.440

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Authors:  Noor A A Giesbertz; Annelien L Bredenoord; Johannes J M van Delden
Journal:  PLoS Biol       Date:  2012-08-07       Impact factor: 8.029

Review 5.  Ethical aspects of human biobanks: a systematic review.

Authors:  Danijela Budimir; Ozren Polasek; Ana Marusić; Ivana Kolcić; Tatijana Zemunik; Vesna Boraska; Ana Jeroncić; Mladen Boban; Harry Campbell; Igor Rudan
Journal:  Croat Med J       Date:  2011-06       Impact factor: 1.351

6.  Consent for use of clinical leftover biosample: a survey among Chinese patients and the general public.

Authors:  Yi Ma; HuiLi Dai; LiMin Wang; LiJun Zhu; HanBing Zou; XianMing Kong
Journal:  PLoS One       Date:  2012-04-27       Impact factor: 3.240

7.  Consent procedures in pediatric biobanks.

Authors:  Noor Aa Giesbertz; Annelien L Bredenoord; Johannes Jm van Delden
Journal:  Eur J Hum Genet       Date:  2014-12-24       Impact factor: 4.246

8.  Evaluating the consent preferences of UK research volunteers for genetic and clinical studies.

Authors:  Susan E Kelly; Timothy D Spector; Lynn F Cherkas; Barbara Prainsack; Juliette M Harris
Journal:  PLoS One       Date:  2015-03-11       Impact factor: 3.240

9.  Public views on the donation and use of human biological samples in biomedical research: a mixed methods study.

Authors:  Celine Lewis; Margaret Clotworthy; Shona Hilton; Caroline Magee; Mark J Robertson; Lesley J Stubbins; Julie Corfield
Journal:  BMJ Open       Date:  2013-08-07       Impact factor: 2.692

10.  Newspaper coverage of biobanks.

Authors:  Ubaka Ogbogu; Maeghan Toews; Adam Ollenberger; Pascal Borry; Helene Nobile; Manuela Bergmann; Timothy Caulfield
Journal:  PeerJ       Date:  2014-07-31       Impact factor: 2.984

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