Biobanks and registries
For many years, researchers at CRB have provided constructive advice on how to deal with ethical and legal aspects of research using human tissue material and personal data.
We collaborate with biomedical scientists and publish our findings in peer reviewed journals.We have looked at ethical frameworks and policy, regulatory aspects of biobank and registry research, issues relating to informed consent, ethical review, integrity concerns, trust, genetic testing, indicental findings, commercialization, public and patient perceptions, rare diseases and issues related to children, biobanks and genetics.
What we do is sometimes referred to as ELSI-research. We are part of the BBMRI-ERIC ELSI common service and run ELSI services for the Swedish counterpart BBMRI.se where, among other things, we publish our newsletter Biobank Perspectives regularly and comment recent developments on the Ethics Blog.
Biobank Perspectives Newsletter
- Swedish research data inquiry on exceptions 2016-12-13
- New research on cyber governance of health data 2016-12-09
- Legal aspects of direct-to-consumer genetic testing 2016-12-07
- Managing data protection in practice – Swedish perspectives 2016-09-26
- Public-private research partnerships: Workshop 2016-09-23
ELSI Commmon Service for BBMRI-ERIC
BBMRI-ERIC aims to increase efficacy and excellence of European bio-medical research. We are part of the ELSI-common service.
ELSI-Service for BBMRI.se
We run the ELSI-Services for BBMRI.se (BioBanking and Molecular Resource Infrastructure of Sweden): a national effort for efficient and automated collection of biological material funded by the Swedish Research Council.
Arthritis risk communication
Euro-TEAM is a 7th framework programme aiming towards early diagnosis and biomarker validation in arthritis management. We are working with risk communication.
Rare disease research
RD-Connect is a 7th framework project that aims to build an integrated platform connecting registries, biobanks and clinical bioinformatics for rare disease research. We address the ethical, legal and social issues (ELSI).
Arthritis: Early treatment
The development of new therapeutic agents against Rheumatoid arthritis (RA) and RA-like diseases requires a dynamic interaction between studies in humans and in animal models of disease.
Storing biobank data
Helping Europeans get healthier
BBMRI-LPC is building a network to connect established large-scale biobanks to new European biobank initiatives for large prospective cohort studies (LPC). We are involved in ethical and legal issues of transnational access to samples and data.
B3Africa will harmonise ethical and legal frameworks between European and African partner institution and provide an informatics solution for data management, processing and sharing that works with limited Internet access.
Handling incidental findings
How should we handle incidental findings in biobank and -omics research? Jennifer Viberg Johansson is looking at the arguments for and against disclosure of incidental findings.
Cardiopulmonary risk communication
We study how research participants and patients perceive risk for heart and lung disease. And what they want to know.
Citizen health in genomics
We are part of CHIP ME, a community of researchers and stakeholders to promote public-private initiatives in public health genomics.
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.