BBMRI-ERIC is a joint European platform for biobanking that will provide a workable research infrastructure to process, share and store human biological samples, including associated medical data.
One of the biggest hurdles for biobank research today is the differences in regulatory frameworks for biobanking within the EU. BBMRI-ERIC is a European Research Infrastructure Consortium, or 'ERIC', for biobanking.Part of this work is providing a common service for the ethical, legal and societal issues.
This ELSI service service facilitates and supports cross-border exchanges of human biological resources and data attached for research uses, collaborations and sharing of knowledge, experiences and best practices.
BBMRI-ERIC ELSI Policy
As a step toward a BBMRI-ERIC ELSI policy, the ELSI Common Service arranged a workshop on sharing and access to data and human biospecimens for the benefit of patients. The workshop was held in September 2015.
CRB's ELSI-Service team
Our expert team is part of the ELSI service with:
- Mats G. Hansson, Professor of biomedical ethics
- Heidi C. Howard, PhD Neurogenetics
- Moa Kindström Dahlin, LLD public law
The service is directed by Anne Cambon Thomsen at the French national centre for scientfic research (CNRS) and co-directed by Mats G. Hansson at CRB, Marialuisa Lavitrano from the Milano-Bicocca University and Jasper Adriaan Bovenberg, founder of the Legal Pathways Institute.
Biobanks and registries in research
We aim for a biobank and registry management that satisfies ethical and legal demands from the research community, the public and the individual.
ELSI-Service for BBMRI.se
We have run 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. Now replaced by Biobank Sweden.
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.
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.
Biobank perspectives: Current issues in ethics and law
All issues of Biobank perspectives are avaliable for download.