The Westerberg enquiry on register-based research is reviewed

The Westerberg enquiry on register-based research "Unik kunskap genom registerforskning" (SOU 2014:45, http://www.regeringen.se/sb/d/18300/a/242912) is currently under review by stakeholders after having been put on ice during the election. In short, the proposal includes

1. a new law on register databases opening up the possibility to create general purpose databases for research

2. a widening of the interpretation of the purpose limitation in the current legislation

3. an extension of the period for keeping key files for research databases to at least 20 years

4. a new data protection rule on "research secrecy" will make it possible to have data from government registers added to the research databases without secrecy vetting and will make data in these databases protected by absolute secrecy

5. data to research registers are based on government ordinances and not on ethical or secrecy vetting

6. research use of these data requires ethical and secrecy vetting

7. universities have to upgrade their data protection security

8. The National Board of Health and Welfare should set up a national information database on biobanks and provide health care and research with data on where samples can be found bsed on personal ID numbers