Toetsing van biobanken: lessen uit het Parelsnoer Initiatief

Ethical and legal aspects of biobanking continue to be a topic of concern. The String of Pearls Initiative (PSI) helped establish new norms for biobank governance in The Netherlands. This article gives an overview of issues that emerged from the medical-ethical review processes of PSI. The criteria applied to biobanking projects by Ethical Review Boards were derived from the legally prescribed criteria for medical research. However, these criteria were interpreted in radically diverging ways. Key issues included the legal status of prospective research-dedicated biobanks, informed consent, monitoring of the use of biobanks, and alignment of biobanking policies both within and between research departments. The article calls on all actors involved in biobanking to continue to strive for the harmonization of biobanking policies. A certain degree of central coordination is crucial in order to improve on collaborative biobanking initiatives.

Conflict of interest and financial support: The Department of Philosophy at the University of Amsterdam, where M. Boeckhout is employed, has received a subsidy from the Centre for Society and Genomics, a centre of the Netherlands Genomics Initiative (subsidy number 70.1.068). Yellow Research, Amsterdam, where J. van Dijk is a partner and legal advisor for the String of Pearls initiative, were in receipt of a fee from the String of Pearls initiative. The AMC Amsterdam, the employer of Prof. D.A. Legemate, has received a fee from the Netherlands Federation of University Medical Centres for the work carried out by Prof. Legemate in his function as former Scientific Director of the String of Pearls Initiative.