The barriers to sample and data sharing between biobanks in Switzerland

Abstract

Background The potential benefits of biobanks for biomedical research have received much attention in the last decade. Research using stored biosamples enables material from numerous individuals to be pooled by a research group, without the need for the various donors to be present. Hence, studies may achieve large sample sizes from multinational donor pools. However, the potential of biosample research has reportedly been limited by inefficiencies and difficulties in the sample sharing process. The aim of this thesis is to determine whether there are currently obstacles affecting the sharing and exchange of biological samples, both in general and with particular regard to Switzerland. If reports of such obstacles are made, then the degree to which these issues affect biobank stakeholders will be explored. This data will be compared with the current literature, and will form the basis of recommendations for addressing any difficulties. Methods A literature review was conducted in order to identify explicit references to obstacles in sharing biosamples. Following this, semi-structured interviews were carried out with biobank stakeholders working in Switzerland. Stakeholders included biobank managers, clinicians, pathologists, lawyers and ethicists. Participants responded to questions from an interview guide addressing their experiences with sample sharing, potential obstacles to this process, and specific difficulties at the stages of sample acquisition, storage, and use. Results 15 distinct barriers to sample sharing were identified in 27 articles. The most frequently cited issues were differences in standard operating procedures between biobanks, and legal issues concerning sample use and transfer. 36 individuals participated in the interviews. Standard operating procedures were again one of the most frequently cited explicit difficulties; in contrast with the literature review, the consent process, and networking in Switzerland, were also frequently mentioned. Finally, issues only sparsely mentioned in the literature, such as considerations of fairness, the nomenclature of biobanking, and authorship on publications, were addressed in detail. Conclusions The findings of this study suggest that clarity and transparency must be a priority in all written materials regulating biosample exchange, in order to reduce confusion about storage practices, obtained consent and the existence of legal constraints and requirements. The second key message is that networking amongst biobanks and biosample researchers is still at an early stage; interdisciplinary databases and biobank conferences may help to inform a greater number of researchers about the potential for collaboration and sample exchange.