Sharing the Golden Standard? A critical view on the GDPR stand on sharing biobank data within and without the EU

Current Issues in Information Governance Seminar Series hosted by Prof Justine Pila and Prof Jane Kaye.

Today's speakers will be Prof Jane Reichel and Santa Slokenberga

Title : Sharing the Golden Standard? A critical view on the GDPR stand on sharing biobank data within and without the EU.

Abstract :

According to Recital 4 to the GDPR, the processing of personal data should be designed to serve mankind. GDPR has the ambition to serve not only the EU, but also the world. This is manifested in Chapter V, on international transfer of personal data to third countries or international organizations, where it is stated that the aim is to ensure that the level of protection of natural persons guaranteed by the GDPR is not undermined (article 44). On the other hand, since the Regulation allows for national derogations or requires national safeguards to be enacted, the level of protection provided by the GDPR is in many cases defined more closely by the Member States. Article 89 and the requirements for processing personal data in research is one example of this. In order to justify the privileged status of researcher in the GDPR, the Member States must guarantee “appropriate safeguards” for the processing of personal data for research purposes and are invited to allow for derogations from the rights of data subjects.  National traditions for biomedical research can still be upheld, thus allowing the scattered legal landscape to be maintained. This became evident recently in regards to European research initiatives in combatting the Covid-19 pandemic, where legal difference made collaboration inefficient and costly. 

If the EU cannot uphold consistency in the regulatory biomedical research framework within the EU, what level of protection is to be upheld world-wide? How can valid national tradition of other states be respected? Will the far-reaching ambition of the EU in itself turn out to be a hinder for international research collaboration, or rather an agonizing fall from above?