European data law is impeding studies on diabetes and Alzheimer’s, researchers warn.

Pedro_P

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▼ For many people, the most apparent effect of the European privacy law called the General Data Protection Regulation (GDPR) has been a flourishing of website pop-ups, demanding your consent to store browsing behavior as cookies. An annoyance, perhaps, but hardly more than an inconvenience. For Francis Collins, director of the U.S. National Institutes of Health (NIH), however, the regulation has turned out to be a serious impediment to research.
Since 1993, Collins has been principal investigator for a project studying type 2 diabetes in Finnish people, who have relatively homogenous genetics and detailed health records. Finland's National Institute for Health and Welfare has sent 32,000 DNA samples to Collins's laboratory. He and his U.S. collaborators used the data to discover more than 200 places in the genome where variants increase the risk of illness. But in May 2018, when GDPR came into force, the Finnish institute stopped all data sharing on the project, because NIH could not provide guarantees that would satisfy the institute's interpretations of the law's requirements. Progress has since "slowed to a crawl," Collins says.
This week in Brussels, representatives from NIH, academia, industry, patient advocacy groups, the European Commission, and data protection authorities met to share their GDPR frustrations. They hope to highlight the obstacles it creates for some international collaborations and explore possible responses. "I hope this is only a temporary slowdown, and that the meeting in Brussels opens the way to a solution," Collins says.
The European Union's GDPR rules, which apply to the 28 EU member states plus Iceland, Liechtenstein, and Norway, include common sense principles, such as minimizing personal data used in research and using appropriate safeguards. Because "there's now teeth and liability attached," with steep penalties for rule breakers, the regulation has "scared everyone," says Cathal Ryan, assistant commissioner at Ireland's Data Protection Commission in Dublin, leading to scrutiny of projects that rely on personal data.
The European Union recognizes some countries (▪ ▪ ▪)

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he European Union recognizes some countries—Argentina, Japan, New Zealand, and Switzerland, among others—as providing adequate data protection, which frees EU scientists to share data with researchers in those nations. But not in Canada and the United States.