Centre for Research Ethics & Bioethics (CRB)

New law for research databases?

2014-09-12

The Swedish Government considers national registries a unique and important resource. But the legal situation for these registries is unclear and could stand in the way of research.

The Government appointed a committee to analyze the legal conditions for registry based research in Sweden. The report, “Unik kunskap genom registerforskning,” was presented in June this year.

The report analyzes the legal pre-requisites for registry based research in Sweden. It suggests specific changes in the formulation of several current laws to address the problems identified by the committee. The committee also proposes a new law for research databases.

The law is meant to replace a temporary law on registries for research (2013:794) that expires at the end of next year. The new law is not specific to databases in a particular research field and would enter into force when the old one expires.

Mats G. Hansson, director of CRB, was one of the appointed committee experts. According to him, the report puts the spotlight on the difference between infrastructures for research and individual research projects. It also suggests a way to make this distinction clear in the new legislation. This, he says, is a significant step forward for registry based research.

By Pär Segerdahl

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