Obstacles to European research projects with data and tissue: solutions and further challenges

E.B. van Veen, European Journal of Cancer, 2008
Evert-Ben van Veen discusses how medical research with data and tissue can proceed in Europe, advocating a more balanced equilibrium between the privacy interests of those whose data and tissue will be used and the interests of those who will profit from this research. Solidarity is proposed as the ethical rationale to mitigate the obsession with informed consent. The concept of personal data is discussed. The data and tissue chain in European research projects is described and the PET’s used to combine privacy protection with the necessity to combine data from various sources. A critical analysis is given of the idea that research with tissue (biobanks) should result in individual feed-back to the donors. Harmonisation of legislation on the European level is not seen as the way forward, good research governance is. Principles for good research governance should be developed from the bottom-up, by researchers together with most the interested stakeholders, namely patients.