Is there a persistent consent problem with biobanking? New publication by CNTRP Core 1 team
Are biobanks spending billions to gather genes, tissue and health information on the mistaken belief that the consent process is adequate?
Researchers throughout the world, including within the CNTRP, are going to great lengths to get hold of genes, tissue and health information, yet, remarkably, there is very little consensus on how we should be going about doing that or even if they have permission to do it.
In a new commentary titled Genes, cells and biobanks: Yes, there’s still a consent problem published in PLOS Biology, CNTRP Core 1 Leads and University of Alberta health law researchers Timothy Caulfield and Blake Murdoch argue there remains a deep lack of clarity around basic legal and ethical principles surrounding consent, and these issues are only going to intensify.
“The international research community has built a massive and diverse research infrastructure on a foundation that has the potential to collapse, in bits or altogether,” says University of Alberta health law expert Timothy Caulfield.
Indeed, governments, research institutions and industry have invested billions in the creation of large, complex biorepositories—such as UK Biobank and the US Precision Medicine Initiative. These research projects involve promising research and often include hundreds of thousand of research participants.
However, despite this investment in biobanking, there are still fundamental and unresolved issues associated with consent and the ownership of samples.
As well, there are numerous social trends—including the rise of a belief in biorights, the increasing involvement of industry, growing concern about privacy and high profile research controversies—that are increasing the policy tension around this issue.
What is required, the authors argue, is real policy action.
“This issue would benefit from more explicit recognition of the vast disconnect between the current practices and the realities of the law, research ethics and public perceptions,” said Caulfield.
Caulfield T, Murdoch B (2017) Genes, cells, and biobanks: Yes, there's still a consent problem. PLoS Biol 15(7): e2002654. https://doi.org/10.1371/journal.pbio.2002654