Biobanks and registries: Ethics & law
Our research provides construtive advice on how to deal with ethical aspects of research using human tissue and personal data. 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.
Biobank Perspectives Newsletter
- First European biobank for research on breast milk and medicines 2019-06-05
- Biobank Sweden launches ELSI Helpdesk 2018-10-29
- Genetic risk: Should researchers let people know? 2018-09-24
- Transferring biobank research data between the EU and African countries 2018-08-23
- Looking for legal project coordinator 2017-12-19
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.
Technology, ethics and human rights
Genomics, Enhancement, AI & Robotics
The SIENNA project will address ethical issues in three new and emerging areas with major socio-economic impact.
Health data in cyber space
We are part of a Nordforsk funded project that develops recommendations for resilient governance mechanisms for cyberhealth.
Preferences
Cardiovascular risk information
Åsa Grauman will investigate how research participants perceive their personal risk for cardiovascular disease, and their perceptions on cardiovascular risk information.
Handling incidental findings
How should we handle incidental findings in biobank and -omics research? Jennifer Viberg Johansson's PhD project examined the arguments for and against disclosure of incidental findings.
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.
