Biobanking and Biomolecular Research Infrastructure

BBMRI-NL co-ordinates the collaboration between Dutch biobanks. It is not a biobank itself, but facilitates collaboration by harmonisation and enrichment of existing biobanks. BBMRI-NL also facilitates data management and analysis and stimulates the dialogue about legal and ethical aspects.

Co-operation between biobanks is essential in finding the answers to important questions about (chronic) diseases in the interest of better patient care in an ageing population. BBMRI-NL is an initiative of researchers and clinical doctors from eight academic medical centres and other knowledge institutions. BBMRI-NL is the Dutch hub inside the European Biobanking and Biomolecular Resources Research Infrastructure project. BBMRI-NL is financed by the Netherlands Organisation for Scientific Research (NWO).

To find out more about what BBMRI-NL is and does, you can download our Project Plan or the Executive Summary thereof (for the moment only available in Dutch). You can also order a copy by sending an email to m.heesakker@bbmri.nl.

Projects

The larger part of BBMRI-NL’s budget is set apart for the enrichment and harmonisation of Dutch biobanks. The steering committee decides on the awarding of grants (money) to projects for enrichment and harmonisation, to data management and analysis, and to laying the legal, social and ethical foundations for collaboration between biobanks in the Netherlands and Europe.

BBMRI-NL awards grants to two kinds of projects for harmonisation and enrichment: small scale Complementation projects and large scale Rainbow projects.

Donor Participation

Biobanks, and thus also the collaboration initiative BBMRI-NL, could not exist without large numbers of donors: patients and healthy people who are willing to part with body matter and data. Therefore, it is important that they have the ability to participate in biobanks and BBMRI-NL. Work on a participation model for donors is in progress.

Legal / ethical / social aspects

Body matter and privacy sensitive data are of course protected by laws and regulations. These differ in different European countries and receive a lot of attention in several countries (including the Netherlands). It is crucial that legal aspects are treated carefully whenever a new application for biobanks arises. Also, new legal and ethical questions arise with the upscaling that BBMRI-NL and BBMRI-EU entail. In the past few years, Dutch legal experts have pioneered in gathering data on laws and regulation and analyzing the consequences for BBMRI.

New legal developments will be actively followed from a broad international knowledge base, to ensure the rights of the involved donors on the one hand, and to prevent unnecessary hindrances to the progress of scientific research. BBMRI also stimulates the dialogue on ethical aspects of biobanks and the scientific research conducted using biobanks.

Wiki

BBMRI hosts a Wiki Legal Platform on www.legalpathways.eu. Built for and by biobanking specialists and legal advisors from all over Europe, the wiki provides legal information, best practices, forms and other useful information for biobankers.

Code for Good Usage

BBMRI-NL is a member of COREON/Federa, the Dutch federation of Biomedical Scientific Societies, which has as its aim to make and keep the regulations pertaining to health care and biomedical research in the Netherlands usable. BBMRI-NL was involved in the revision of the Code of Conduct for responsible use of body matter for scientific research, which was presented on Wednesday 25 May 2011. A new chapter in the Code is dedicated to the handling of body matter gathered and stored exclusively for scientific research ('de novo' usage). You can order a copy of the Code here (only in Dutch).

To apply scientific results in patient care, a (costly) translation is often required. As a rule, this translation is done by companies that market the innovations (new diagnostics, medicine, services). Co-operation with companies is therefore important to ensure that patients reap the rewards of scientific research. Concessions in the field of privacy, ethics, and donors’ wishes are inadmissible. BBMRI-NL will assess which models for co-operation with companies are best suited, and will follow the local and European developments in the area of valorisation. One upcoming model, in which the Netherlands play a major part, is the public-private co-operation as practiced by the Top Institute Pharma, the Centre for Translational Molecular Medicine and the BioMedical Materials program.

The collaboration between these three initiatives has resulted in Life Sciences & Health, a combined initiative for and by all parties active in the health-related life sciences in the Netherlands. Life Sciences & Health is driven by the sector and empowered by the Ministry of Economic Affairs. The main objective of this innovation program is to capitalize on knowledge by stimulating this important sector of the Dutch economy to grow.