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Don Chalmers, Michael Burgess, Kelly Edwards, Jane Kaye, Eric M. Meslin, Dianne Nicol, Marking Shifts in Human Research Ethics in the Development of Biobanking, Public Health Ethics, Volume 8, Issue 1, April 2015, Pages 63–71, https://doi.org/10.1093/phe/phu023
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Abstract
Biobanks are increasingly being created specifically for research purposes. Concomitantly, we are seeing significant and evolving shifts in research ethics in relation to biobanking. Three discrete shifts are identified in this article. The first extends the ethical focus beyond the protection of human subjects to the promotion of broader community benefits of research utilizing biobanked resources, and an expectation that these benefits will be shared. The second involves the evolution of the traditional consent paradigm for future research uses of biobanks resources that are not in contemplation at the time of donation. The third involves a move away from single project management to more dynamic governance accountability to research participants and the public. These shifts may take different local and institutional forms but share common recognizable elements.