Research: Biobank Ethics
Interactive conference on biobanking in Uppsala 20-21 September 2012
Welcome to an interactive conference on biobanks! Meet biobank researchers and industry, listen to interesting talks and participate in idea labs and workshops. Topics range from the latest technology through ethical challenges and legislation to outcome in clinical praxis and drug development. The conference is arranged by BBMRI.se.
Biobank Ethics
In several research projects, legal experts in medical law as well as in intellectual property rights, philosophers, and social pharmacists have collaborated with geneticists, epidemiologists, pathologists and economists in order to seek the kind of biobank management that would satisfy the interests of both the research community and the public when it comes to developing new drugs and treatments, at the same time protecting the privacy of the individual.
The Centre is currently participating in three large networks that involve biobank research:
- AutoCure - Curing autoimmune rheumatic diseases is an EU funded research project within the sixth framework programme. 26 different partners from all over Europe, out of which 6 are industrial partners and 20 from the acadeaemia, are nvolved in the project.
- BBMRI.se (Biobanking and Biomolecular Resources Research Infrastructure) is a network that has received support from the Swedish Research Council. We are responsible for Work Package 7 on ethics and law.
- BTCure (Be The Cure) focuses on Rheumatoid arthritis (RA) and RA-like diseases. It is funded by IMI (Innovative Medicines Initiative) and consists of 33 partners from both academia and industry.
Other ongoing research includes:
- Atonomy and trust in biobank research: PhD project connected to AutoCure
- Ethical aspects of biobank research and individual rights vs. the public good: PhD project
- Ethical aspects of longitudinal studies involving children: Collaboration with researchers at Linköping University responsible for the ABIS (All Babies in South-East Sweden) study.
- Cancer control using population based registries and biobanks (CCPRB) (EU network of excellence)
- Information, consent and coding - keys to an ethical praxis in biobanking
- The use of human biobanks - ethical, social, economical and legal aspects
- When and under what circumstances genetic information may be used
Publications
- Biobank ethics articles with abstracts (pdf) from the Centre for Research Ethics and Bioethics.
- Hansson, M.G. & Levin, M. (eds.), Biobanks as Resources for Health, ISBN 91-506-1659-6, 2003, 276 pages
- Hansson, M.G. (ed.) The Use of Human Biobanks - Ethical, Social, Economical and Legal Aspects, Report 1, ISBN 91-506-1472-X, 2001, 93 pages.
Conference reports
- Conference: Biboanks as Health Resources (Uppsala Castle, March 10-11, 2003)
- Symposium: Rethinking Informed Consent: The limits of autonomy (Sandhamn, 12-13 June 2006)
More information
- Mats G. Hansson, Professor of Biomedical Ethics
- Stefan Eriksson, Associate Professor, Senior Researcher
- Kathinka Evers, Associate Professor, Senior Researcher
- Joanna Stjernschantz Forsberg, MD, PhD Student
- Linus Johnsson, MD, PhD Student
- Anna-Sara Lind, Associate professor of Public Law
- Jane Reichel, Associate Professor of Administrative Law
- Pär Segerdahl, Associate Professor of Philosophy
- Jennifer Viberg, BSc, MSc, Research Assistant
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