Biobanking and data sharing: a plurality of exchange regimes

Abstract

Key activities in biomedicine and related research rely on collections of biological samples and related files. Access to such resources in industry and in academic contexts has become strategic and represents a central issue in the general framework of rising patenting practices and in debates about the knowledge economy. It raises important issues concerning the organisation of scientific and medical work, the outline of data-sharing guidelines, and science policy's contribution to the elaboration of an adapted framework. This paper presents an ethnographic study of three French human biobanks. Building on field work (participant observation and in-depth interviews), the study focuses on data access in the concrete practices in biobanks. The paper develops a perspective based on an analysis of different exchange regimes. We argue that access practices are submitted to the different regimes that can coexist and be articulated within the daily activities of each biobank. We also discuss how this perspective can further our understanding of biomedical research, and how it might inform data access policy.

Research biobanks: A two-faced future

“…Other authors have highlighted this typical bad practice in the sharing behaviour of research groups. [10][11][12] Clearly, it contributes to the spread of a climate of mistrust and a lower propensity for cooperation within the scientific community.…”

Tracing Biological Collections

“…Relationships between primary and secondary users are complex and may be by gift, collaboration, or contractual collaboration. 7 A "biological resource impact factor" has been proposed. 8 As the pleiotropic role of numerous genes becomes increasingly apparent, it is essential to favor collaborations beyond the original field, in which reputation may be an efficient incentive for sharing resources and fostering collaborations.…”

Samples and data accessibility in research biobanks: an explorative survey

“…The tension raising between the responsibilities researchers have towards the tax paying public and their individual needs (often referring solely to academic and scientific interests modulated through "epistemic values") has its counterpart in the perception of the scientific community regarding biobanks and their services. Milanovic et al (2007) have clarified this concept, defining biobanks as "ambiguous entities" that "might be presented as places for archival storage of a cultural patrimony freely accessible for relevant PeerJ PrePrints | https://dx.doi.org/10.7287/peerj.preprints.1212v1 | CC-BY 4.0 Open Access | rec: 6 Jul 2015, publ: 6 Jul 2015 PrePrints activities, or as commercial enterprises with lucrative potential". At the same time, participants to biobanks' researches have also raised concerns about the fact that, over particular conditions, private and commercial interests in biobanking may prevail public good and so leading to social tensions (Godard et al, 2010).…”