Journal article
Consent and research governance in biobanks: Evidence from focus groups with medical researchers
EA Whitley, N Kanellopoulou, J Kaye
Public Health Genomics | KARGER | Published : 2012
DOI: 10.1159/000336544
Abstract
Much is known about patient attitudes to ethical and legal questions in the context of biobanking, particularly regarding privacy protection and consent. However, little is known about the attitudes of medical researchers who use biobanks for research to these issues. Four focus groups with medical researchers in the UK were conducted in 2010-2011. The study highlights a range of issues associated with the research oversight and consent process (including obtaining ethical approval to use biobank samples and particular concerns for international studies), the benefits and limitations of broad consent and the possibilities of revoking consent. Many of these issues originate in the relatively ..
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Awarded by Engineering and Physical Sciences Research Council
Funding Acknowledgements
[ "EnCoRe (http://www.encore-project.info) is an interdisciplinary research project, which has developed an IT system to make giving consent and revoking consent as easy for individuals as turning on and off a tap. The project partners are Hewlett-Packard Laboratories, HW Communications, QinetiQ, the London School of Economics and the University of Oxford. The project runs from June 2008 to May 2012. It receives funding from the UK Government's Technology Strategy Board, Economic and Social Research Council and Engineering and Physical Sciences Research Council (grant EP/G002541/1).", "The authors gratefully acknowledge Prof. Peter Dabrock, Prof. Herbert Gottweis and Dr. Andrea Vermeer for their support and organization of the PRIVATE Gen Workshop 'Privacy and Post-Genomics Medical Research: Challenges, Strategies, Solutions' supported by the German Federal Ministry of Education and Research (Bundesministerium fur Bildung und Forschung, BMBF)." ]