Who's afraid of ghosts? Ethics, data, and disconnected collaboration in epidemiological research
Paper short abstract:
Research within a large-scale project called BioSHaRE-EU shows that those engaged in collaboration struggle with aspects of collaboration and respond by creating new bureaucratic procedures, because of ethical concerns, however, these concerns are about authorship, not confidentiality.
Paper long abstract:
International multi-disciplinary collaboration would be expected to run into different problems than collaborations of smaller scope. This paper is based on research within a large-scale project called BioSHaRE-EU (Biobank Standardisation and Harmonisation for Research Excellence in the European Union). What can the view from the ground in an international infrastructural epidemiology project tell us about ethics, power and knowledge production within the European scientific research community? Based on analysis of audio and video data from a BioSHaRE meeting held in Amsterdam in 2012, the concerns expressed by those engaged in efforts to advance non-disclosive virtual pooling of data among studies in Europe are explored. Deliberations about disclosure are evident, however, the only ethical concerns articulated are about other researchers using data, not about the confidentiality of the data, signalling ethical concerns distinct from the research ethics which are considered by the now-ubiquitous ethics committees set up over the past half-century. The researchers opt for bureaucratic mechanisms to limit the scope of collaboration in response to these concerns. Bureaucracy may be an indigenous strategy for safely-reinscribing power structures attractive for European researchers when faced with uncertainty and appears to have the inherent appeal of appearing to be doing things 'properly'. This helps clarify why a free and open collaboration which requires no collaboration is both attractive and hard to achieve in practice. In particular, an exploration of the relationship between the structural and the individual levels offers a glimpse of why and how disinclination to collaborate manifests.
Empirical bioethics in STS. Making science, technology and society in research and deliberative spaces