Sweden needs a framework involving all databases containing sensitive personal health information to improve registry-based research.
The on-going study, to be concluded in June, looks into how health research based on patient registries can be improved. Databases that contain sensitive health information should only be based at public universities, the study proposes, but the government should regulate these databases through a national framework.
The study was prompted by the LifeGene project, a large research database at the Karolinska Institutet in Stockholm that looks at the way in which genes affect health, along with environmental and lifestyle factors. The project collected a large amount of personal data from volunteers, but had to be stopped in 2011, because the country’s data inspection board said that the purpose of collecting the data for “future research” was too vague, and did not give volunteers enough information on what their data will be used for.
A temporary law allowing the project to continue is in force until 2015, and the study’s conclusions are expected to be used to create a permanent law, effective for 2016.
Health research in Sweden is becoming increasingly more dependent on registries, such as the personal identity code and the birth registry. This has led to concerns regarding the accessibility and privacy issues surrounding the data.
“The Nordic countries have good registers, and these should be used more in research,” said Bengt Westerberg, a former Swedish social affairs minister and coordinator of the study. “The goal is to get research results that can improve health and wellbeing.”
Westerberg added that more accurate research results could be provided through registries.