07 February 2020
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Biobanken.nl now updated and live!

The website Biobanken.nl provides biobanks with the opportunity to communicate information about biobanking and biobank research to the general public. On the advice of the Public and Patient Advisory Council of BBMRI, Aaike van Oord of the NKI, realized a full make-over of the website. He did this in close cooperation with a diverse group of stakeholders, including patients and some big biobanks. Biobank research professionals can refer people to biobanken.nl and can use it as a tool to inform the general public about their role. 

The goal of the Biobanken.nl website is to create more transparent and accessible communication towards the public about biobanking research (with clinical and population biobanks). The website Biobanken.nl has been reinstated as the place for patients, participants and public to find answers to their questions. The site has been updated with the latest information and made future proof, both technically and financially. 

Joint effort

The website has been reinstated in co‐operation with a diverse group of stakeholders, varying from BBMRI‐NL, large biobanks like PALGA and Lifelines and organizations like VSOP and the Patient and Public Advisory Council of BBMRI‐NL. It was supported financially by BBMRI.

For biobanks, medical researchers and patient organizations

Within the network of Health-RI, the website Biobanken.nl offers a clear and easily accessible medium for communicating, sometimes difficult or sensitive, information to the public. For example about privacy, legal rights, research techniques, impact on patients, ethical boundaries, FAIR data stewardship and patient involvement in biobanking research.

We invite all biobank research professionals to use Biobanken.nl for their communication and transparency towards the public. In co-operation with media like Kennislink.nl and Dutch hospitals, we will communicate the existence of the website to patients and the public in 2020.

“Patients demand more transparency, which we are happy to provide. This website enables that. Patients can read about rules involving biobank research and they can find answers to their questions.” - Prof. Marjanka Schmidt, researcher NKI/Leiden University

“It’s valuable that participants can read everything about the importance and positive effects of joining biobanks in the Netherlands.” - Ilse Broeders, project manager Lifelines

NEW key feature: send us your questions!

Biobankers are invited to refer people to biobanken.nl with any question they might have about biobanking and the storage and use of their data and tissue.

Biobanking research and its legal and ethical limitations are sometimes complicated. The legal specialists and ethicists of the ELSI Servicedesk will provide expert advice if needed. New answers will be added to the website’s frequently asked questions.