Human biospecimens are indispensable for the development of new diagnostic methods and therapies. Both academic researchers and those working in the pharmaceutical industry depend on patients and healthy people to provide biosamples. But what are the opinions of patient representatives on the use of samples stored in academic biobanks for industrial research projects? And what conditions do they demand for cooperation between university biobanks and industry? To gain a better understanding of their perspectives, the German Biobank Node (GBN) organised a focus group with eight patient representatives in Berlin on 28 January 2020, who spoke for a broad range of diseases. "Focus group" is a term used in qualitative social research for a moderated, thematically focused group discussion.
Lack of trust in industry cooperations?
So far, academic biobanks only rarely cooperate with industrial partners. Many fear that sample donors might lose their trust in biobanks if they pass on their samples to industry. The participants of the focus group, which was moderated by Dr. Corinna Klingler (GBN) and Dr. Melanie Goisauf (from the European biobank organisation BBMRI-ERIC), discussed the benefits and risks of industry cooperations. The patient representatives assessed aspects such as possible medical progress on the one hand and data protection problems or even misuse on the other quite heterogeneously.
Comprehensible communication of research results
They agreed that not only companies should benefit from cooperation, but also sample donors and biobanks. They proposed that industrial partners should be obligated to report research results obtained with biosamples – in generally understandable language and on platforms accessible to donors.
Uniform framework conditions for cooperation
GBN is now evaluating the results of the debate. On that basis and in the course of further discussions, GBN will develop a uniform framework for industrial cooperation acceptable to all stakeholders.
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