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Ethical, Legal & Social implications

  

ELSI Servicedesk

The ELSI Servicedesk offers guidance on and answers to the ethical, legal and societal questions around Personalized Medicine research faced by life science professionals, policymakers and patients. The website provides frequently asked questions with answers, and the opportunity to contact the helpdesk, where one of the ELSI experts answers questions. Read more
 

Privacy tools

The GDPR Tool helps Population Biobanks, Cohorts & Registries to comply with the new GDPR that was entered into force in 2018. Read more
 

Donor interaction

The book The Donor as Partner provides guidelines for biobanks, registries and researchers to help set up a participation strategy suited to their specific situation. It gives insights into why and how to involve donors, and conditions that contribute to sustainable embedding of participation initiatives. Read more
 

Public website

The website biobanken.nl contains information for patients and other interested people about biobanks and biobank research. Read more
 

Patient & Public Advisory Council

Since biobank research depends largely on voluntary participation, and biobanks contain data and samples from citizens and/or patients, public trust and societal involvement are crucial. To ensure the ideas and concerns of these groups are heard, the Patient and Public Advisory Council was created. Read more

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