Bengt Westerberg has been asked to perform a governmental inquiry investigating the possibilities/prerequisites to perform register-based research in Sweden. The investigation is to be reported by 2014-06-30 and Bengt has announced that he highly appreciates researchers' views on how to facilitate Swedish registry-based research.
Please provide Bengt with your information/experiences in this area. What is working well? What needs to be improved?
Bengt can be contacted via e-mail: firstname.lastname@example.org.
Additional information regarding the investigation is found below.
Regarding research which requires access to personal records two social interests may conflict with each other, on the one hand, the interest in conducting research resulting in important new knowledge and on the other hand, the interest in protecting the individual's privacy. It is important that the regulatory framework meets the individual's privacy in order to maintain public confidence in the research. Against this background, a dedicated investigator (Bengt Westerberg) will be instructed to examine the possibilities to carry out so-called register-based research.
The investigator will submit legislative proposals and other proposals with the aim to
- facilitate the ability of authorities with responsibility for registers to provide information for research purposes taking into account the protection of the privacy of individuals,
- facilitate co-processing of records for research purposes and
- enable collection of personal data for registers kept for special and explicit research purposes and for longitudinal studies that are within the framework of such purposes, and at the same time safeguarding integrity.
The investigator will also
- examine if the existing confidentiality of data handled in research is sufficient to protect the individual's integrity during the research process.