Sweden’s comprehensive registries—including the cancer registry, birth registry and the personal identity code—are a treasure trove for health researchers. But such large databases require the collection of vast quantities of sensitive data, and it is becoming increasingly difficult for the government to strike a balance between supporting high-quality research and ensuring that personal data are protected.
The country’s laws allow scientists to use anon-ymised registry data for their projects, but do not permit the collection of personalised data unless the purpose is specifically agreed in advance. Researchers must also delete the data after their projects have been completed, which makes it impossible to build large collections of personalised data.
“We’re using our research funding over and over again to build the same kind of database,” says Magnus Stenbeck, a researcher at Karolinska Institutet in Stockholm. Instead of being able to build on past work, researchers “are wasting money and energy, and not getting ahead with research as fast as they could”.
This is why the Swedish government launched an inquiry last year to investigate how to make it easier to collect personalised information for research while regulating to prevent leaks and misuse. Stenbeck, who is a member of the inquiry committee, says the group aims to allow databases of personalised information to be built for research without having to be deleted after use. A central access point to such databases, open only to public universities, should be created to prevent misuse and leaks, he says.
The inquiry, due to be completed by July, was prompted by the 2010 LifeGene incident. The genetics project, based at Karolinska Institutet, collected large quantities of personal data from volunteers but had to be stopped in 2011 because Sweden’s data inspection board said the purpose of collecting the data for “future research” was too vague.
In 2013, a temporary law was put in place to allow the project to continue until 2015, and recommendations from the inquiry are expected to create a permanent law by 2016. So far more than 30,000 people have voluntarily provided their data, according to Nancy Pedersen, the scientific director of LifeGene and a researcher at Karolinska Institutet.
However, Stenbeck says it is not yet clear what the permanent law will look like, because of a revision of the EU’s data protection legislation that could affect national laws. “The idea for the inquiry came up before we knew about the changes in Europe, so we’re not expecting legislation any earlier than 2016,” he says.