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"Who owns your poop?": insights regarding the intersection of human microbiome research and the ELSI aspects of biobanking and related studies Hawkins, Alice K; O’Doherty, Kieran C

Abstract

Background: While the social, ethical, and legal implications of biobanking and large scale data sharing are already complicated enough, they may be further compounded by research on the human microbiome. Discussion The human microbiome is the entire complement of microorganisms that exists in and on every human body. Currently most biobanks focus primarily on human tissues and/or associated data (e.g. health records). Accordingly, most discussions in the social sciences and humanities on these issues are focused (appropriately so) on the implications of biobanks and sharing data derived from human tissues. However, rapid advances in human microbiome research involve collecting large amounts of data on microorganisms that exist in symbiotic relationships with the human body. Currently it is not clear whether these microorganisms should be considered part of or separate from the human body. Arguments can be made for both, but ultimately it seems that the dichotomy of human versus non-human and self versus non-self inevitably breaks down in this context. This situation has the potential to add further complications to debates on biobanking. Summary In this paper, we revisit some of the core problem areas of privacy, consent, ownership, return of results, governance, and benefit sharing, and consider how they might be impacted upon by human microbiome research. Some of the issues discussed also have relevance to other forms of microbial research. Discussion of these themes is guided by conceptual analysis of microbiome research and interviews with leading Canadian scientists in the field.

Item Metadata

Title
"Who owns your poop?": insights regarding the intersection of human microbiome research and the ELSI aspects of biobanking and related studies
Creator
Hawkins, Alice K; O’Doherty, Kieran C
Contributor
University of British Columbia. Centre for Applied Ethics
Publisher
BioMed Central
Date Issued
2011-10-07
Description
Background: While the social, ethical, and legal implications of biobanking and large scale data sharing are already complicated enough, they may be further compounded by research on the human microbiome. Discussion The human microbiome is the entire complement of microorganisms that exists in and on every human body. Currently most biobanks focus primarily on human tissues and/or associated data (e.g. health records). Accordingly, most discussions in the social sciences and humanities on these issues are focused (appropriately so) on the implications of biobanks and sharing data derived from human tissues. However, rapid advances in human microbiome research involve collecting large amounts of data on microorganisms that exist in symbiotic relationships with the human body. Currently it is not clear whether these microorganisms should be considered part of or separate from the human body. Arguments can be made for both, but ultimately it seems that the dichotomy of human versus non-human and self versus non-self inevitably breaks down in this context. This situation has the potential to add further complications to debates on biobanking. Summary In this paper, we revisit some of the core problem areas of privacy, consent, ownership, return of results, governance, and benefit sharing, and consider how they might be impacted upon by human microbiome research. Some of the issues discussed also have relevance to other forms of microbial research. Discussion of these themes is guided by conceptual analysis of microbiome research and interviews with leading Canadian scientists in the field.
Subject
human microbiome; health research; consent; privacy; ownership; return of results; policy; biobanks; ELSI; research ethics
Genre
Article
Type
Text
Language
eng
Date Available
2015-11-05
Provider
Vancouver : University of British Columbia Library
Rights
Attribution 4.0 International (CC BY 4.0)
DOI
10.14288/1.0220745
URI
http://hdl.handle.net/2429/55243
Affiliation
Population and Public Health (SPPH), School of; Medicine, Faculty of; Non UBC
Citation
BMC Medical Genomics. 2011 Oct 07;4(1):72
Publisher DOI
10.1186/1755-8794-4-72
Peer Review Status
Reviewed
Scholarly Level
Faculty
Copyright Holder
Hawkins and O'Doherty; licensee BioMed Central Ltd.
Rights URI
http://creativecommons.org/licenses/by/4.0/
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Attribution 4.0 International (CC BY 4.0)