Digital orphans: Data closure and openness in patient- powered networks

This is the author accepted manuscript. The final version is available from Palgrave Macmillan via the DOI in this record.In this paper, we discuss an issue linked to data-sharing regimes in patient-powered, social-media-based networks, namely that most of the data that patient users share are not used to research scientific issues or the patient voice. This is not a trivial issue, as participation in these networks is linked to openness in data sharing, which would benefits fellow patients and contributes to the public good more generally. Patient-powered research networks are often framed as disrupting research agendas and the industry. However, when data that patients share are not accessible for research, their epistemic potential is denied. The problem is linked to the business models of the organisations managing these networks: models centred on controlling patient data tend to close networks with regard to data use. The constraint on research is at odds with the ideals of a sharing, open and supportive epistemic community that networks’ own narratives evoke. This kind of failure can create peculiar scenarios, such as the emergence of the ‘digital orphans’ of Internet research. By pointing out the issue of data use, this paper informs the discussion about the capacity of patient-powered networks to support research participation and the patient voice.We are indebted to the anonymous reviewers and the editor, who with their supportive and constructive comments helped us to better clarify and highlight the argument of the article. We would like to also thank friends and colleagues who have offered valuable comments and suggestions on early drafts of this paper. We would like to especially thank Barbara Prainsack, Sabina Leonelli, Alena Buyx, and David Teira. This research is funded by the European Research Council (ERC) under the European Union’s Seventh Framework Programme (FP7/2007–2013)/ERC grant agreement number 335925, and the German Federal Ministry of Education and Research (grant number 01GP1311

A controversy about crossbreeding in a conservation programme : the case study of the Flemish red cattle breed

The aim of this paper was to understand the complexity of a conservation programme of a local breed by linking genetic and social data. This approach is illustrated by the case of the Flemish Red cattle breed, which has been crossbred since the 1950s, mainly with the Danish Red breed. Farmers and other people involved in the management of this breed were interviewed about breeding goals and practices. The genetic variability of the breed and the genetic impact of crossbreeding were assessed via pedigree data. The opportunity to use crossbreeding was found to be the main controversy, if not the only one, among the different institutional stakeholders involved in the management of the breed. However, the farmers said that they attributed little importance to the proportion of Danish Red genes in the AI bull genome. From the pedigree analysis, the proportion of Danish Red genes in the Flemish Red breed was found to increase from the early 1970s to the early 1980s and to then stabilise around an average value of 28%. The proportion of Flemish Red cows with no Danish Red genes in their genome decreased regularly and became null in the early 2000s. More than 90% of the Flemish Red cows born at that time had a proportion of Danish Red genes ranging from 1/8 to 1/2. The Danish Red genes were found to mainly originate from crossbred bulls and not from pure Danish Red bulls. This paper focuses on the nature of the gene pool preserved in such a case, and the need to clearly define the goals of conservation programmes is highlighted

Phage therapy as a potential solution in the fight against AMR: obstacles and possible futures

Phage therapy, the use of bacteriophage viruses to treat bacterial infections, has existed for more than a hundred years. However, the practice is struggling to develop, despite growing support over the past 15 years from researchers and doctors, who see it as a promising therapy in the context of the rise of antimicrobial resistance (AMR). While the reasons for these developmental difficulties are complex, in this article we wish to address the effects of pharmaceutical regulations on phage therapy. By showing how phages are assimilated to an umpteenth antibiotic in legal texts, but also in certain medical practices, this article proposes to analyze the consequences of such regulatory categorization both for their production and the logistics of administration of proof of their efficacy in randomized controlled trials (RCTs), as well as the underlying concepts of infection and treatment. This paper follows Chandler’s work on the concept of antibiotics as infrastructure and its inversion presented by antimicrobial resistance. Phages as living, dynamic, evolving, and specific entities, do not lend themselves easily to current categories, norms, and development models. In this sense, they act as disruptors, revealing the limitations imposed by the existing infrastructure. More precisely here, and to continue Chandler’s initial thought process, this paper aims to show that antibiotics also form a kind of epistemological infrastructure, which acts as a powerful inhibitor to the development of phage therapy. In this sense antibiotics prevent the development of solutions to the problem they contribute to create. But the difficulties phage therapy faces, as highlighted in this article, can be interpreted as entry points for thinking of another medicine and imagining other possible futures. This analysis is based on a 3-year fieldwork study (2016–2019) in Europe (France, Belgium, and Switzerland), during which we conducted semi-directed interviews with various phage therapy stakeholders (physicians, researchers, pharmacists, regulators, patients, and patient associations), participatory observation in labs and observations during symposia and workshops on phages and phage therapy

Crisis communication during the Ebola outbreak in West Africa: The paradoxes of decontextualized contextualization

As organizations involved in the 2014–2016 Ebola virus disease (EVD) outbreak response in West Africa are now drawing lessons from the crisis, the “manufacture of consent” (Burawoy 1979) emerges as an important issue. Recommendations and public health interventions developed during the response were met with suspicion and often resistances by affected populations, pushing involved organizations and actors to reflect about the validity of their risk communication tools and concepts. These difficulties stressed the numerous shortcomings of risk communication practices, which proved inefficient in an unfamiliar social and cultural context. Many reasons can be pointed-out to explain this failure to communicate risks and public health measures effectively under these circumstances. They include: unrealistic goals for communication; lack of integration of social science skills and knowledge in communication guidelines and human resources; underestimation of the breadth of communication-related tasks; over-segmentation and lack of clarity of communication concepts and expertise (risk communication, crisis communication, social mobilization, and health promotion are all but a few of these categories). Among all these possible lines of inquiry, I want to address what can arguably be considered the most fundamental flaw of crisis communication during the West African EVD episode: its inability to take into account and analyze efficiently the context of the intervention

Co-designing farming systems and decision support tools : a generic framework

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Crisis communication during the Ebola outbreak in West Africa: the paradoxes of decontextualized contextualization

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