Human Microbiome Research and Social Fabric, Project

Scientific studies using new technology and advanced systems of statistical modeling are rapidly improving our understanding of the human microbiome. This new field of biomedical research promises to launch us into a new age of personalized medicine that encompasses pharmacogenomics and personalized nutrition. It may also become a public health tool that will benefit the population at large by tracking the transformation and spread of microorganisms. Learning more about the microbiome may also be important for how we conceive and address the ethics of medicine and biomedical research. The goals of this project were, therefore, to identify the ethical, legal, and social implications (ELSI) raised by human microbiome research, so as to provide insight and guidance for scientists engaged in the work and members of the society who will be asked to cooperate in studies and live with the consequences. Although we are just starting to understand the human microbiome, it is important to think about issues in advance so that we can try to avoid at least those pitfalls that can be identified now. To that end, researchers have written a book to communicate their insights and conclusions and to initiate conversations about human microbiome research. With the support of an NIH Human Microbiome Project grant, the group assembled an interdisciplinary team of 27 health professionals, scientists, and scholars from the humanities and social sciences to explore issues raised by human microbiome research. Through an intense process of mutual education, group discussion, consensus formation, writing, and critiquing, the research group composed the seven chapters that comprise the volume that is being published by Oxford University Press in 2013, The HumanMicrobiome: Ethical, Legal, and Social Concerns. The team’s working hypothesis was that learning about the human microbiome will expand the scope of ethical reflection even when it does not raise entirely unique issues. The team tried both to locate our understanding of the microbiome within the existing rich and intricately textured social fabric and to reexamine common beliefs, policies, and positions in multiple domains from the new perspective afforded by our developing appreciation of the human microbiome. Some issues raised by study of the human microbiome are very similar to issues encountered in other domains, while others are significantly different from those that arise elsewhere. In those novel cases, the team tried to consider just how unique these factors are and how they should be addressed. Accordingly, the team will identify relevant models and points of comparison for grounding our response to the ethical, legal, and social issues that emerge from work on the human microbiome. In this volume the team focuses on the most general features of human microbiome research and identifies broad issues related to the microbiome. It begins with (1) a background chapter that provides critical information about microbes, their place in our world and human history, and information about today’s technology in studying them. The following chapters address several distinct ethical, legal, and social domains in which work on the human microbiome is likely to have significant implications: (2) personal identity; (3) property and commercialization; (4) privacy; (5) human subject research; (6) sample banking and biobanking; and (7) population and public health research. Each of these topics involves conceptually interesting issues and insights, historically relevant examples, and information about germane regulations and legal cases.