Category: Blog

Biobanks, collections of human samples and associated health data – how to apply EU GDPR?

  How is the EU General Data Protection Regulation expected to apply to biobanks, collections of human samples and associated health data?   Here you can find an update of answers to Frequently Asked Questions (FAQs). The FAQs… Read More

De Maatschappelijke Adviesraad Biobankonderzoek: het nieuwe discussieplatform voor biomedische onderzoeksinfrastructuur

Medisch onderzoek is sterk afhankelijk van toegang tot medische gegevens en persoonlijk lichaamsmateriaal. Vertrouwen, steun en inspraak van burgers en patiënten in ontwikkelingen op dit terrein is daarom cruciaal. De Maatschappelijke Adviesraad Biobankonderzoek, recent opgericht door BBMRI-NL,  biedt… Read More

FAQs on the General Data Protection Regulation for biobanking

  Update available! 15 March 2017 Original news item: In May 2016, the General Data Protection Regulation (GDPR) was officially published and made into law (see here for the definitive Regulation in all official EU languages). From mid 2018 onwards, the… Read More

De maatschappelijke adviesraad zoekt deelnemers

Update: inmiddels is de Raad begonnen met zijn werkzaamheden. Voorlopig zijn we niet op zoek naar nieuwe leden. De maatschappelijke adviesraad voor biobankonderzoek zoekt deelnemers! De raad is opgericht om onderzoekers en beleidsmakers te adviseren over wat burgers en patiënten… Read More

White smoke on the General Data Protection Regulation!

Last Wednesday, the European Parliament and Council concluded their negotiations on a new EU-wide data protection regime. For a long time, there was a real threat that health research would be hit by overly onerous standards and forms… Read More

Privacy and health research: a clash of European values?

Negotiations on the new EU General Data Protection Regulation are entering their very last rounds. The terms under which data can be processed for research purposes are still up for debate. Autonomy and privacy are at the heart… Read More

Patient power: countervailing power

Patients are increasingly expected to play a leading role in an era of Personalized Medicine. But what power do patients actually wield in the complex world of biomedicine? The strategic and pragmatic benefits of patient empowerment are well-known… Read More

New European rules on Data Protection: a cause for concern

Hundreds of thousands of European citizens and patients are contributing data and tissue to health research. Their contributions are immensely valuable to progress in biomedicine. But proposals for new European rules on data protection run the risk of… Read More

Our ELSI mission: integrating ethics into infrastructure

For some, the ‘ELSI’ acronym stands for a hurdle that needs to be taken in order to claim ‘ethics was here’, or a narrow concern with the terms and conditions under which people contribute tissue and data to… Read More

Welcome to our ELSI blog!

Water, gas, electricity, internet: these are so widely available that we often take their supply for granted. Yet on looking more closely at such infrastructures, and on suffering the consequences once we’re cut off, we often realize that… Read More