Media Discourse on the Social Acceptability of Fecal Transplants.

Advances in human microbiome research have generated considerable interest in elucidating the role of bacteria in health and the application of microbial ecosystem therapies and probiotics. Fecal transplants involve the introduction of gut microbes from a healthy donor's stool to the patient and have been documented as effective for treating Clostridium difficile infections (CDIs) and some other gastrointestinal disorders. However, the treatment has encountered regulatory hurdles preventing widespread uptake. We examined dominant representations of fecal transplants in Canadian media and found that fecal transplants are often represented as being inherently disgusting or distasteful (the "ick factor"). This "ick factor" is used to construct different messages about the treatment's social acceptability and legitimacy. We conclude that an over-emphasis on the "ick factor" constrains public discourse from a more nuanced discussion of the social challenges, scientific concerns, and regulatory issues surrounding the treatment.

Informed consent in biobank research: a deliberative approach to the debate.

As acknowledged in the literature, public consultation related to biobanks has been largely oriented to assuring and informing rather than seeking considered input. In April and May of 2007, the authors participated in running a deliberative public engagement event in British Columbia, Canada, which sought to enhance public input related to the governance of biobanks. The topic of the event was 'Biobanking in British Columbia (BC)' and at the event a random-digit dialed demographically stratified sample of 21 participants deliberated on what values and interests ought to be considered in the regulation and use of biobanks for health research. In this paper, we report results related to debate over the place of informed consent in biobank research. Drawing on a pre/post-survey and qualitative analysis of event transcripts, we show that participants indicated strong support for biobanks, for a general reduction in concern for withdrawal of samples, and placed a strong emphasis on the need for review of biobanks research that is independent of funders and researchers. In this context, there was persistent disagreement about when consent was required for new research activities.

Perspectives on engaging the public in the ethics of emerging biotechnologies: from salmon to biobanks to neuroethics.

In anticipation of increasing interest in public engagement, this article seeks to expand the current discussion in the neuroethics literature concerning what public engagement on issues related to neuroscience might entail and how they could be envisioned. It notes that the small amount of available neuroethics literature related to public engagement has principally discussed only communication/education or made calls for dialogue without exploring what this might entail on a practical level. The article links across three seemingly disparate examples-salmon, biobanks, and neuroethics-to consider and clarify the need for public engagement in neuroscience.

Assessing the quality of a deliberative democracy mini-public event about advanced biofuel production and development in Canada.

The importance of evaluating deliberative public engagement events is well recognized, but such activities are rarely conducted for a variety of theoretical, political and practical reasons. In this article, we provide an assessment of the criteria presented in the 2008 National Research Council report on Public Participation in Environmental Assessment and Decision Making (NRC report) as explicit indicators of quality for the 2012 'Advanced Biofuels' deliberative democracy event. The National Research Council's criteria were selected to evaluate this event because they are decision oriented, are the products of an exhaustive review of similar past events, are intended specifically for environmental processes and encompass many of the criteria presented in other evaluation frameworks. It is our hope that the results of our study may encourage others to employ and assess the National Research Council's criteria as a generalizable benchmark that may justifiably be used in forthcoming deliberative events exploring different topics with different audiences.

Public concerns regarding the storage and secondary uses of residual newborn bloodspots: an analysis of print media, legal cases, and public engagement activities.

Recently, public concerns have been expressed regarding the non-consented storage and secondary research uses of residual newborn bloodspot (RBS) samples. The purpose of this paper is to examine public responses to the storage and secondary uses of RBS that can be identified through analysis of media, legal cases, and documented public engagement activities. Coverage in the examined print media confirmed the importance of RBS to journalists and those people who expressed their concerns to these journalists. Several lawsuits, brought by parents concerned about the storage of newborn bloodspots, placed the practice of storing NBS into the spotlight. This resulted in controversial debates and the mandatory destruction of millions of samples. Analysis of public engagement activities across several jurisdictions indicated that across (inter)national boundaries there are common elements to what is perceived as inappropriate governance of RBS. Public concerns were grouped into five main themes: trust, transparency, confidentiality, ownership, and stigmatization/discrimination. The results of our analysis help to make a compelling case for placing citizens at the center of the debate and developing policy about the storage and secondary uses of newborn bloodspots.