From consent to institutions: Designing adaptive governance for genomic biobanks
Kieran C O'Doherty, Michael M Burgess, Kelly Edwards, Richard P Gallagher, Alice K Hawkins, Jane Kaye, Veronica McCaffrey, David E Winickoff
SOCIAL SCIENCE & MEDICINE | PERGAMON-ELSEVIER SCIENCE LTD | Published : 2011
Biobanks are increasingly hailed as powerful tools to advance health research. The social and ethical challenges associated with the implementation and operation of biobanks are equally well-documented. One of the proposed solutions to these challenges involves trading off a reduction in the specificity of informed consent protocols with an increased emphasis on governance. However, little work has gone into formulating what such governance might look like. In this paper, we suggest four general principles that should inform biobank governance and illustrate the enactment of these principles in a proposed governance model for a particular population-scale biobank, the British Columbia (BC) G..View full abstract
We gratefully acknowledge funding from the BC Cancer Agency that supported this research. We would also like to thank three anonymous reviewers and the members of the "Making Connections" group for valuable discussion and feedback on the ideas presented in this paper.