Abstract
BackgroundWhile 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.DiscussionThe 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.SummaryIn 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.
Highlights
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
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
Summary As outlined in our introduction, there are a range of ELSI issues raised by human microbiome research, we have focussed primarily on the intersection of human microbiome research and biobanking
Summary
Privacy The ability to protect both clinical and genetic data stored in biobanks has been pivotal to biobank discussion since such research was conceived[24]. The point here is that (i) there is evident value in the feces of (at least some) individuals, and that (ii) both the treatment, as well as research pertaining to the treatment, are likely to be associated with cultural sensitivities, awkwardness, and possibly embarrassment on the part of patients and research participants This suggests that serious consideration be given to questions of ownership as they pertain to human microbiome derived samples. There are some areas in which the already difficult considerations involving privacy, consent, ownership and return of results are further complicated by the additional collection and study of microbial DNA associated with humans Identifying these challenges is not intended to hinder microbiome research, but rather to assist researchers, clinicians, and patients to work together in ways that build understanding and cooperation, while avoiding unnecessary conflict. If only to avert costly court cases and mismatched expectations between researchers and participants, a reconsideration of the categorisation of human waste may be important
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