Navigating social and ethical challenges of biobanking for human microbiome research

BMC Medical Ethics 18 (1):1 (2017)
Abstract
BackgroundBiobanks are considered to be key infrastructures for research development and have generated a lot of debate about their ethical, legal and social implications. While the focus has been on human genomic research, rapid advances in human microbiome research further complicate the debate.DiscussionWe draw on two cystic fibrosis biobanks in Toronto, Canada, to illustrate our points. The biobanks have been established to facilitate sample and data sharing for research into the link between disease progression and microbial dynamics in the lungs of pediatric and adult patients. We begin by providing an overview of some of the ELSI associated with human microbiome research, particularly on the implications for the broader society. We then discuss ethical considerations regarding the identifiability of samples biobanked for human microbiome research, and examine the issue of return of results and incidental findings. We argue that, for the purposes of research ethics oversight, human microbiome research samples should be treated with the same privacy considerations as human tissues samples. We also suggest that returning individual microbiome-related findings could provide a powerful clinical tool for care management, but highlight the need for a more grounded understanding of contextual factors that may be unique to human microbiome research.ConclusionsWe revisit the ELSI of biobanking and consider the impact that human microbiome research might have. Our discussion focuses on identifiability of human microbiome research samples, and return of research results and incidental findings for clinical management.
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DOI 10.1186/s12910-016-0160-y
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References found in this work BETA
Personal Identity.Nada Gligorov, Jody Azzouni, Douglas P. Lackey & Arnold Zweig - 2013 - In Rosamond Rhodes, Nada Gligorov & Abraham Schwab (eds.), The Human Microbiome: Ethical, Legal and Social Concerns. Oxford University Press.

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The Human Microbiome.Lily Frank, Keith Benkov, Martin Blaser, Matthew E. Rhodes & Rhoda Sperling - 2013 - In Rosamond Rhodes, Nada Gligorov & Abraham Schwab (eds.), The Human Microbiome: Ethical, Legal and Social Concerns. Oxford University Press.
Methodology and Ontology in Microbiome Research.John Huss - 2014 - Biological Theory 2014 (4):1-11.
Research Ethics.Rosamond Rhodes & Martin J. Blaser - 2013 - In Rosamond Rhodes, Nada Gligorov & Abraham Schwab (eds.), The Human Microbiome: Ethical, Legal and Social Concerns. Oxford University Press. pp. 128.
Public Health and Research on Populations.Rosamond Rhodes & Stefan Bernard Baurnrin - 2013 - In Rosamond Rhodes, Nada Gligorov & Abraham Schwab (eds.), The Human Microbiome: Ethical, Legal and Social Concerns. Oxford University Press.

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