Leading European scientists say that there is an urgent need for greater coordination and harmonisation between Europes biobanks repositories of genetic and other information from large numbers of people that can be used to investigate complex diseases such as cancer and Alzheimers. To enable this, there should also be closer coordination amongst funding agencies and between regulatory authorities, as well as increased and sustained funding for biobanks. This will optimise the development of a harmonised legal and ethical framework for their operation, researchers say.
The proposals are contained in a science policy briefing* published today by the European Science Foundation. The report was produced by a group of top experts in the field, chaired by Professor Gertjan van Ommen of Leiden University Medical Center in The Netherlands and Professor Frank Skorpen of the Norwegian University of Science and Technology in Trondheim, Norway.
The report says that the study of complex diseases requires comparisons between large numbers of people, and for this reason data on peoples health and lifestyles gathered from surveys together with information contained in biobanks have become indispensable. While Europe has many large and well-organised biobanks, valuable and irreplaceable national collections typically suffer from under-utilisation due to fragmentation of the European biobanking research community.
Furthermore, legal, ethical and social differences between nation states can often impede promising international initiatives. For Europe to stay at the forefront and to take full advantage of the huge research potential in its human biobanks, there is an urgent need for coordination and harmonisation of the biobanking and biomolecular resource infrastructure, the report says, adding, practical regulatory formats have become unnecessarily diverse due to the multitude of independent national legislative processes in the member states. This seriously hampers progress in a major field where Europe is otherwise poised to take a leading role.
The policy briefing says that lack of sustained funding is a general problem for the maintenance and operation of central resources in the life sciences and that this applies particularly to biobanks, which are expensive to set up and maintain. We need to develop a consolidated long-term funding framework for these invaluable resources, a framework that includes national and European funding schemes, healthcare systems, academic users and industrial parties.
The overall goal, the report says, should be for a pan-European biobanking infrastructure that is sustainably funded and that works within a legal, ethical and social framework that encourages the exchange of research and data between countries.
The report recommends that a strategic working group be set up to initiate the moves that will ultimately achieve this goal.
|Contact: Gertjan van Ommen|
European Science Foundation