TuBaFrost 4: access rules and incentives for a European tumour bank.
Lopez-Guerrero JA., Riegman PHJ., Oosterhuis JW., Lam KH., Oomen MHA., Spatz A., Ratcliffe C., Knox K., Mager R., Kerr D., Pezzella F., van Damme B., van de Vijver M., van Boven H., Morente MM., Alonso S., Kerjaschki D., Pammer J., Carbone A., Gloghini A., Teodorovic I., Isabelle M., Passioukov A., Lejeune S., Therasse P., van Veen E-B., Dinjens WNM., Llombart-Bosch A.
When designing infrastructure for a networked virtual tumour bank (samples remain at the collector institutes and sample data are collected in a searchable central database), it is apparent that this can only function properly after developing an adequate set of rules for use and access. These rules must include sufficient incentives for the tissue sample collectors to remain active within the network and maintain sufficient sample levels in the local bank. These requirements resulted in a key TuBaFrost rule, stating that the custodianship of the samples remains under the authority of the local collector. As a consequence, the samples and the decision to issue the samples to a requestor are not transferred to a large organisation but instead remain with the collector, thus allowing autonomous negotiation between collector and requestor, potential co-authorship in publications or compensation for collection and processing costs. Furthermore, it realises a streamlined cost effective network, ensuring tissue visibility and accessibility thereby improving the availability of large amounts of samples of highly specific or rare tumour types as well as providing contact opportunities for collaboration between scientists with cutting edge technology and tissue collectors. With this general purpose in mind, the rules and responsibilities for collectors, requestors and central office were generated.