Sharing human samples and patient data: Opening Pandora’s box

Abstract Background Sharing of clinical research data is a much-debated topic. Actions are being taken at various levels ranging from industry cooperative data sharing models to high-level policy interventions. Similar approaches for sharing biological samples are lacking. Aims and methods An in-depth understanding of the motives for sharing, and the still too often lack thereof, is acquired through semi-structured interviews with 32 experts. Results Moral, societal, scientific, and economic reasons favoring sharing are driving a change in the behavior of both commercial and non-commercial organizations. Whereas concerns of losing control, the impact on incentives to invest, privacy and data protection considerations, pragmatic impediments, and samples' finite nature greatly impede exploiting the scientific potential of these valuable patient resources. Conclusion Addressing these concerns by mitigating the risks can provide incentives for sharing, and thereby leverage scientific research. Finally, a collective vision is necessary by all stakeholders that sharing will stimulate science and innovation in the medium and long term, and thereby outweigh potential short term disadvantages.