Although big-data research has met with multiple controversies in diverse fields, political and security implications of big data in life sciences have received less attention. This paper explores how threats and risks are anticipated and acted on in biobanking, which builds research repositories for biomedical samples and data. Focusing on the biggest harmonisation cluster of biomedical research in Europe, BBMRI-ERIC, the paper analyses different logics of risk in the anticipatory discourse on biobanking. Based on document analysis, interviews with ELSI experts, (...) and field research, three types of framing of risk are reconstructed: data security, privacy, and data misuse. The paper finds that these logics downplay the broader social and political context and reflects on the limits of the practices of anticipatory governance in biobanking. It argues that this regime of governance can make it difficult for biobanks to address possible future challenges, such as access to biomedical data by authorities, pressures for integrating biobank data with other type of personal data, or their use for profiling beyond medical purposes. To address potential controversies and societal implications related to the use of big data in health research and medicine, the paper suggests to expand the vocabulary and practices of anticipatory governance, in the biobanking community and beyond. (shrink)

Freezers with biospecimen deposits became biobanks and later were networked at the pan-European level in 2013 under the Biobanking and BioMolecular Resources Research Infrastructure—European Research Infrastructure Consortium (BBMRI-ERIC). Drawing on document analysis about the BBMRI-ERIC and multi-sited fieldwork with biobankers in Spain from a science and technology studies approach, we explore what biobanks are expected to do and become under the BBMRI-ERIC framework, and how infrastructural transitions promote particular transformations in biobanking practices. The primary purpose of biobanks in Europe is (...) presented as being to become mediators in contemporary biomedical research (global sharing nodes) distribution, and distributed nodes of samples and their associated data. We argue that infrastructural transitions are complicated and heterogeneous, giving rise to unattended local concerns on adjusting their practices to fit into the BBMRI-ERIC framework, even for non-members, as the case of Spain illustrates, where “old practices” of collection and storage are questioned. In this article, we aim to encourage qualitative studies to explore the lags between pan-European policies and prospects, different contextual interpretations, and biobanking reconfigurations as an opportunity to explore what that lag is made of (e.g. tensions with “old practices,” unresolved conflicts with the national agendas, reservations on a possible centralization of the biobanking practices by regional biobanks, lack of funding, etc.). Such research could enrich not only policy guidance, but also the understanding of technoscientific infrastructures’ scalability. (shrink)

Switzerland has an excellent culture of medical research and is a melting pot for medical experts with international expertise. Nevertheless, as in other countries, the resources available to medical researchers are not being fully used. Biological samples, which enable a host of medical research studies to be carried out without invasive methods involving patients, are frequently left unused or forgotten. The aim of this study is to examine the experiences of biobank stakeholders regarding the use or underuse of biosamples, in (...) order to develop paths to optimize biosample research. Interviews were carried out with 36 biobank stakeholders in Switzerland concerning their experiences with biosample use, and the possible obstacles at each stage of the process. Interviews revealed that standard operating procedures were the most frequently cited obstacle, although these were not judged to be severe hindrances. Despite a stated desire to develop biosample research, skepticism of sharing networks and wariness of new partnerships were strong themes. Biobanking still functions as an emerging field, in which exchange practices have yet to be established at the national and international levels. Sample exchange continues to function largely based on personal contacts; while this is an inherent feature of competitive medical research, opportunities for large-scale studies may be lost due to excessive caution. (shrink)