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About the Authors:
Timothy Caulfield
* E-mail: [email protected]
Affiliation: Health Law Institute, Faculty of Law, University of Alberta, Edmonton, Alberta, Canada
ORCID http://orcid.org/0000-0001-5471-6184
Blake Murdoch
Affiliation: Health Law Institute, Faculty of Law, University of Alberta, Edmonton, Alberta, CanadaAbstract
From a research perspective, the interest in biobanking continues to intensify. Governments and industry have invested heavily in biobanks, as exemplified by initiatives like the United Kingdom Biobank and United States' Precision Medicine Initiative. But despite this enthusiasm, many profound legal and ethical challenges remain unresolved. Indeed, there continues to be disagreements about how best to obtain consent and the degree and nature of control that research participants retain over donated samples and health information. Emerging social trends-including concerns about commercialization and perceived rights of continuing control (“biorights”)-seem likely to intensify these issues.
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
Published: July 25, 2017
Copyright: © 2017 Caulfield, Murdoch. This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.
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 Interdisciplinary Chronic Disease Collaboration (ICDC) www.icdc.ca (grant number AIHS CRIO 10007987). The ICDC is funded by the Alberta Innovates Health Solutions CRIO Team Grants Program. The Canadian National Transplant Research Program-Canadian Institutes for Health Research https://www.cntrp.ca (grant number ZA954 RES0023089). The funders 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.
Provenance: Commissioned; externally peer reviewed
Introduction
Driven by advances in genetics, information technology, and cell-line research, interest in the collection and analysis of human biological material continues to intensify. Over the past few decades, there has been a proliferation of biobanks-both large and small [1]-that link tissue and genetic information to a host of other forms of health and personal data. Indeed, biobanking and related research methods have been characterized as an essential and potentially “revolutionizing” approach to biomedical...