Department of Psychology, University of Guelph, Guelph, ON, N1G 2W1, Canada.
BMC Med Genomics. 2011 Oct 7;4:72. doi: 10.1186/1755-8794-4-72.
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.
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.
生物库和大规模数据共享的社会、伦理和法律影响已经足够复杂，而人类微生物组的研究可能会使情况进一步复杂化。
人类微生物组是指存在于每个人体内部和表面的所有微生物。目前，大多数生物库主要关注人体组织和/或相关数据（例如健康记录）。因此，社会科学和人文学科中关于这些问题的大多数讨论（适当地）都集中在生物库的影响以及与人体组织相关的数据共享上。然而，人类微生物组研究的快速进展涉及到大量与人体共生的微生物数据的收集。目前尚不清楚这些微生物是否应被视为人体的一部分或独立于人体。这两种观点都有其道理，但最终看来，在这种情况下，人类与非人类、自我与非自我之间的二分法不可避免地会崩溃。这种情况有可能给生物库的辩论增加进一步的复杂性。
本文重新审视了隐私、同意、所有权、结果回报、治理和利益分享等一些核心问题领域，并考虑了它们可能会受到人类微生物组研究的影响。所讨论的一些问题也与其他形式的微生物研究有关。本文通过对微生物组研究的概念分析和对该领域加拿大领先科学家的访谈，对这些主题进行了讨论。
