Researchers throughout the world are going to great lengths to get hold of your genes, tissue and health information. Yet, remarkably, there is very little consensus on how they should be going about doing that. In an essay publishing 25 July in the open access journal PLOS Biology, University of Alberta health law researchers Timothy Caulfield and Blake Murdoch argue that there remains a deep lack of clarity around basic legal and ethical principles surrounding consent, and that these issues are only going to intensify.
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 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 tensions around this issue.
What is required, the authors argue, is real policy action.
"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. 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.
In your coverage please use this URL to provide access to the freely available article in PLOS Biology: https://doi.org/10.1371/journal.pbio.2002654
Citation: 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
Image Caption: Biobanks are going to great lengths to gather human tissues, but there are still questions over whether the consent process is adequate.
Image Credit: Sean Caulfield *Virus #2*, silkscreen and digital on drafting film and paper, 24" x 18," 2016.
Funding: The PACE'OMICS project https://www.genomecanada.ca/en/paceomics-personalized-accessible-cost-effective-applications-omics-technologies (grant number 444CA CIHR GPH129330). Funders supporting PACE'OMICS include Genome Canada, Genome Alberta, the Canadian Institutes for Health Research, and Alberta Health & Wellness. The funder had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript. The Interdisciplinary Chronic Disease Collaboration (ICDC) http://www.icdc.ca (grant number AIHS CRIO 10007987). The ICDC is funded by the Alberta Innovates Health Solutions CRIO Team Grants Program. The funder had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript. The Canadian National Transplant Research Program–Canadian Institutes for Health Research https://www.cntrp.ca (grant number ZA954 RES0023089). The funder had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript.
Competing Interests: The authors have declared that no competing interests exist.
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