David Secko

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.

Biobanking in British Columbia: discussions of the future of personalized medicine through deliberative public engagement

In this article, we examine the role of deliberative democracy theory and practice as a means to enhance policy approaches to ethical and social issues related to biobanks. Biobanks are seen as a vital component in the rapid trend towards personalized medicine, which, while alluring, also face key issues relating to genetic discrimination, privacy, informed consent and a concern regarding how to develop and maintain the trust of citizens. We describe the case of a deliberative public engagement in which a diverse group of citizens deliberated on the appropriate values that should guide biobanking in British Columbia, Canada. We argue that the use of such methods is a necessity if we are to meaningfully consider diverse public interests during the development of biobanks and thereby personalized medicine.

In the Face of Critique: A Metasynthesis of the Experiences of Journalists Covering Health and Science

The qualitative literature related to health and science journalism often states that little is known about the perspectives of journalists. This is, in part, because of individual studies being like scattered pieces of a jigsaw puzzle. In this article, the authors report the results of a qualitative metasynthesis aimed at reassembling the qualitative literature involving health and science journalists. Comprehensive literature searches gave a data set of 21 studies whose synthesis produced 14 metathemes and four taxonomic groupings. This synthesis is used to show the state of qualitative knowledge and the potential for future research.

FOUR MODELS OF SCIENCE JOURNALISM A synthesis and practical assessment

Much of the science communication and journalism studies literature continues to reiterate the same critiques about science journalism. This literature accuses science journalists of inaccuracy, sensationalism, oversimplification and failing to engage audiences in meaningful debate about scientific issues. However, research has yet to offer concrete solutions to journalists that connect theory to practice in an effort to counter these criticisms. In this paper, we approach this gap through the development of clearly articulated models of science journalism that are supported by theoretical considerations of the varying purposes of science communication, and then, importantly, tied to practical story development criteria. Four models are presented: science literacy, contextual, lay-expertise and public participation. These models are clear representations of how science journalism can be produced from within different theoretical frameworks and thereby provide a theoretically-informed but practical guide for nuanced evaluations of the quality of science journalism.

The unfinished science story: Journalist–audience interactions from the Globe and Mail’s online health and science sections

Science journalists are increasingly confronted with the ability of audiences to comment on science stories, create and share multimedia content, and blog about science. Yet, there is a surprising lack of literature exploring the narrative impacts of such changes on science journalism. To fill this gap, this article draws on the concept of the ‘unfinished’ science story to provide a narrative analysis of story-commentary sets from a Canadian newspaper (the Globe and Mail). It shows how the authority to ‘finish’ a scientific narrative now faces: (1) the opening up of science journalism narratives to raw experience; (2) the reframing of issues by audience comments; (3) the emergence of a journalists–audience ‘stress test’; and (4) the heavy existence of negative commentary.

Sequencing the salmon genome: A deliberative public engagement

Salmon genomics is an emerging field that represents a convergence between socially important scientific innovation and a politically volatile topic of significant interest to the public. These factors provide a strong rationale for public input. This report describes such input from a public engagement event based on the principles of deliberative democracy. The event involved a random, demographically stratified sample of 25 British Columbians (Canada). While some participants opposed sequencing the salmon genome on principle, on the whole participants responded favourably, citing the value of increased knowledge of human impacts on salmon, potentially slowing or reversing this impact, and assisting sustainable management of salmon resources. Participants discussed many of the potential implications of the sequencing project and formulated recommendations pertaining to regulations, international treaties, public education and engagement. Overall, the project illustrates that the specific design and implementation of this event is capable of producing sound policy advice from the general public on genomic-related issues.

Responsible innovation: an approach for extracting public values concerning advanced biofuels

The objective of our study was to test an approach for extracting public values concerning a virtually unknown and scientifically complex topic, namely advanced lignocellulosic biofuels, in order to foster responsible innovation of this novel technology in Canada as early on in the policy-making process as possible. As advanced lignocellulosic biofuels are currently an emerging form of liquid fuel for transport, it may be beneficial to open the development of this technology to “upstream” public input. We thereby explore how a deliberative mini-public views the need for advanced lignocellulosic biofuels and their recommendations for supporting or opposing its development and production. Participants of the study engaged in four days of deliberation on their value-based considerations concerning the social acceptability of this technology. On the final day, they developed a series of collective recommendations on three participant-generated agenda items: economic sustainability, unknown environmental and h...

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.

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.

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.