Trends in Biotechnology
Governing UK Biobank: the importance of ensuring public trust
Section snippets
Taking part in UK Biobank
A system of open, as opposed to informed, consent for those who volunteer to participate in UK Biobank is proposed in the Framework because, at the time of donation, its organizers are unable to inform participants of all the potential uses of their samples and personal information. Despite this, it is proposed that further consent would be sought for research outside of the assays covered by the original consent. It is a confusing mix of signals because, in practice, the stated purposes of UK
Governing UK Biobank
The Framework describes how the governance of UK Biobank will be structured internally by three bodies – the Board of Directors, the Science Committee, and the Ethics and Governance Council (EGC) – and externally by medical research ethics committees (MRECs), who will review all research proposals to use the database, and also by the Research Governance Framework for Health and Social Care (RGF) (http://www.ucl.ac.uk/primcare-popsci/nocten/documents/research_pack/res_gov_summ.PDF). Perhaps one
Looking to the future
The UK Biobank is at a crucial stage in its long gestation period. The project has the potential to be a vital resource for biomedical research in the 21st century and a model of how enterprises of this nature should be organized. We hope that the funders will address with greater clarity and detail the issues of participation, incentives and governance when finalizing the Ethics and Governance Framework. The long-term viability of UK Biobank relies on securing public support, trust and
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Cited by (73)
Development of the Knowledge of Genome Sequencing (KOGS) questionnaire
2018, Patient Education and CounselingCitation Excerpt :Although the KOGS was not administered in a survey of the general public in this study, it has been designed as a ‘context-neutral’ measure (in contrast to, for example, knowledge of whole-genome sequencing done for the clinical purpose of diagnosing a rare disease), and so would be appropriate to include in a public survey on whole-genome sequencing. Ensuring public trust is critical to large-scale scientific endeavours [37] and, although the relationship between trust and knowledge is not straightforward [38], an easily-administered measure of whole-genome sequencing knowledge may be a valuable resource as part of a larger set of tools for those working to understand public opinion and views of whole-genome sequencing. It also has potential value to assess change in public knowledge and understanding of whole-genome sequencing over time, or to evaluate the effectiveness of public education interventions, such as the online educational animations about whole-genome sequencing developed by Genomics England [39] and others [5].
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