Centre for Research Ethics & Bioethics (CRB)

Biobank and registry ethics & law

Our research provides construtive advice on how to deal with ethical aspects of research using human tissue and personal data.

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 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.

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Biobank and registry ethics & law, report