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Public Attitudes to Biobanks and Related Ethics and

Governance Issues

 

This report was commissioned to provide the Ethics and Governance Council (the Council) with a summary of the trends, discrepancies and gaps in the current literature on biobanks, with a view to issues affecting the UK Biobank Ethics and Governance Framework (the Framework) and the start of recruitment in early 2007. The report concludes with recommendations on future areas for public attitudes research.

An extensive search of the academic and policy literature was conducted using all the databases, journal and internet searches available to the author (including SCOPUS, Web of

Science, PubMed Central, Psi-Com, Web of Knowledge, Science Direct, Ingenta Connect, Springerlink etc., as well as the catalogue of the Wellcome Trust Library). This prioritised research published since 2000. Acknowledgment and thanks are due to Maria Juliana Moraes de Araujo for her help with the searches.

The resulting bibliography is attached to this report and includes details of author institution, country, and hyperlink to the reference where available.