Norwegian researchers on personal data protection in the prestigious journal Annals of Internal Medicine
The prestigious journal Annals of Internal Medicine published February 19, 2019 two articles on the EU's new data protection regulation (GDPR). In both articles, Norwegian researchers and lawyers are central.
The researchers Njål Høstmælingen and Heidi Bentzen at the University of Oslo and Oslo University Hospital.
The fact that a journal like Annals chooses to publish two articles on GDPR shows the impact of European privacy law in the United States and for research globally.
Heidi Beate Bentzen and Njål Høstmælingen at the University of Oslo and Oslo University Hospital give an easy-to-read and updated description of GDPR in their article Balancing Protection and Free Movement of Personal Data: The New European Union Data Protection Regulation.
There is a concern in the healthcare sector that the GDPR can prevent the flow of information needed for research and health services. The authors show that GDPR aims to promote the free exchange of personal data in the EU / EEA area, rather than restricting or prohibiting it. As such, the GDPR can act as a tool for collaboration in a knowledge society.
GDPR is more about harmonizing the EU / EEA area's rules for processing personal data than about introducing so many new rules, say Bentzen and Høstmælingen. - GDPR will make it easier for Norwegian researchers and healthcare professionals to share personal data information with colleagues in other European countries.
Both researchers are lawyers associated respectively with the Norwegian Research Center for Computers and Law and the Center for Medical Ethics at the Faculty of Law and the Faculty of Medicine at UiO, and The Clinical Effectiveness Research Group at OUS / UiO.
GDPR has received a lot of attention in Norwegian and foreign media, but mostly the media reports are negatively angled, the two say. - Interest in the US is also great. Our message is that GDPR can contribute to more and better research and health care, and be a useful tool for international cooperation.
Heidi Beate Bentzen is also the first author on the article Are Requirements for Deposit Data in Research Repositories Compatible With the European Union's General Data Protection Regulation? in the same issue of Annals of Internal Medicine. Here they show the obstacles researchers are experiencing in connection with publishing research results and making research data available.
The article emerges from work done in the European research network COST Action CHIP ME, says Bentzen, who was one of the leaders of the law and ethics working group in the research network focused on genomics. - It points to challenges that are common to all researchers in the EU / EEA.
Researchers generally want to facilitate for their research to be verified and for new discoveries to be made, but unfortunately, many of the current solutions for making research data available in connection with publishing do not meet the EU's privacy requirements or safeguard the research participants' rights. So far, several European researchers therefore experience problems with publishing their research findings. Solutions for data sharing are urgently needed that enable researchers to fulfill their obligations to the research participants.
We cannot accept a situation where criteria other than scientific excellence are the basis for which articles are published. In the long run, it can threaten the evidence-based medicine as such, says Bentzen. - As we point out in both articles, it is quite possible to establish excellent data sharing solutions within the framework of the GDPR, in fact even more effective solutions than those we have today.