Charitable trusts and human research genetic databases: the way forward?^*

Abstract

Human genetic research databases cast a new light on the controversial issue of which uses of the human body are morally permissible. More specifically, banking human tissue raises issues relating to the ownership of the samples that the participants have donated, to the ownership of the data that are derived through processing the donated samples, and to the management arrangements that better balance the interest of genetic research with the protection of participants' rights. Winickoff & Winickoff suggest that the charitable-trust model is a superior legal arrangement for biobanking compared with private biobanking. This paper critically assesses Winickoff & Winickoff's claim by highlighting some areas of implementation where such a model could be problematic. The charitable trust is certainly an advantageous arrangement because (1) it favors the separation between control and use of the samples, (2) it provides a procedural mechanism that facilitates the participation donor groups in the biobank management and (3) it mediates the different interests that are affected. On the other hand, the charitable-trust model leaves unresolved several issues--among them the ownership of the sample, the right of withdrawal, access and funding mechanism. I conclude that further theoretical and empirical analysis is required in the area.