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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

DOI: 10.1186/1755-8794-4-72

Keywords: human microbiome, health research, consent, privacy, ownership, return of results, policy, biobanks, ELSI, research ethics

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Abstract:

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.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.Biobanks, loosely defined as large collections of biological tissues samples, often with some degree of linked clinical or medical information, have received considerable attention in the ELSI (ethical, legal, social issues of genome research) and scientific literature in recent years[1-3]. This attention is due not just to the complexity of the issues raised by biobank related research, but also because they call into question established research ethics norms and accepted practices[4]. The nature of these ethical conundrums has been well documented, with research focused on issues such as privacy, inform

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