SIMSAM-INFRA
SIMSAM is short for "Swedish Initiative for Research on Microdata in the Social And Medical Sciences", an initiative supported by the Swedish Research Council via its Committee for Research Infrastructure.
By giving priority to interdisciplinary, innovative register-based research, SIMSAM will contribute to better public health and increased knowledge of social issues, for instance which factors in childhood that result in increased risk for obesity or cancer later in life. The initiative is also intended to promote improved and expanded use of registers in research and to increase the knowledge of how registry research is organized in Sweden and internationally.
This is an infrastructure project for population registers in epidemiology and in the social sciences funded by the Swedish Research Council. The project priorities are to A) develop the information from SIMSAM to the research community and provide descriptions of the SIMSAM research data bases, data management work performed on the register data, contact persons, availability, and other additional information related to these. The project will also B) develop a website for register data containing overarching information in Swedish and English on available register data from the central and regional/local authorities (including social, demographic, health care, biobank data sources).
CRB's role in SIMSAM-INFRA
CRB was involved in C) the analysis of the ethical foundation on which current legislation is based, in order to propose rules and applications more appropriate for research. Finally, SIMSAM-INFRA will D) review security solutions, ethical principles and ongoing reforms in the area of personal data for research, and propose legally acceptable security solutions for distributed (federated and other) data systems involving person identified data.
Contact at CRB
Joanna Stjernschantz Forsberg, PhD, was responsible for our work in SIMSAM-INFRA. She defended her thesis on ethical aspects of biobank research – Individual rights vs. the public good? in 2012.
If you have any questions about our work, contact Mats G. Hansson, Professor of Biomedical Ethics.
Biobank and registry ethics & law
For many years, researchers at CRB have provided constructive advise on how to deal with ethical and legal aspects of research using human tissue material and personal data. We have collaborated with biomedical scientists and published our findings in peer reviewed journals. As a summary of this research we have compiled a list of publications with abstracts. We have grouped them thematically to help you find the ones you might be interested in reading. Our publications deal with ethical frameworks and policy, regulatory aspects of biobank and registry research, informed consent, ethical review, integrity concerns, trust, genetic testing, indicental findings, commercialization, public and patient perceptions, rare diseases, children & biobanks & genetics, and biobank studies.
