Global Genes, Local Concerns: A Symposium on Legal, Ethical and Scientific Challenges in International Biobanking
The increasing importance of large-scale, interoperable biobanks can hardly be over-estimated. Biobanks allow researchers with different scientific expertise to analyse large and diverse collections of human biological material (‘HBM’), as well as genetic, clinical, health and other personal data of donors. Biobanks are often established to operate for several decennia and to be used by numerous research projects and by a great variety of stakeholders with different objectives. These may include private companies, university researchers, research foundations, governmental bodies or "hybrid" consortia in the framework of Private Public Partnerships (PPPs). The increasing significance of biobanking requires substantial investments in the creation, organization and maintenance of HBM and “big data” collections. This highlights the importance of an effective governance and use of biobanks.
This Symposium marks the final phase of the Global Genes-Local Concerns project. In accordance with the goals of this large cross-faculty project, the Symposium deals with legal, ethical and scientific challenges in cross-national biobanking and translational exploitation. Leading international experts and invited speakers will discuss how national biobanks contribute to translational research, what opportunities and challenges regulations present for translational use of biobanks, how inter-biobank coordination and collaboration occurs on various levels, and how academic and industrial exploitation, ownership and IPR issues could be addressed and facilitated. Special emphasis will be laid on legal and ethical challenges and opportunities in addressing regulatory barriers to biobank research and the translation of research results, while at the same time securing ethical legitimacy and societal interests.
These issues will be dealt with in 4 main sessions covering (1) BIG DATA AND MODES OF COLLABORATION; (2) PATIENT INVOLVEMENT; (3) TRANSLATIONAL MEDICINE & TECH TRANSFER, as well as (4) GUIDELINES & GOOD GOVERNANCE.
- Bartha Knoppers (CAN)
- Timo Minssen, University of Copenhagen (DK)
- Glenn Cohen, Harvard University (US)
- Tim Caulfield, University of Alberta (Can)
- Michael Madison, University of Pittsburgh (US)
- Jeff Skopek, University of Cambridge (UK)
- Brian Clark, Director, Human Biosample Governance, Novo Nordisk A/S (DK)
- Jane Kaye, University of Oxford (UK)
- Anne Cambon-Thomsen, INSERM, Toulouse / CNRS Director (Fr)
- Klaus Høyer, University of Copenhagen (DK)
- Aaro M. Tupasela, University of Copenhagen (DK)
- Åsa Hellstadius, Stockholm University (Sweden)
- Peter Yu, A&M Texas University (US)
- Esther van Zimmeren, University of Antwerp/Leuven (Belgium)
- Nicholson Price, University of Michigan Law School (US)
- Karine Sargsyan, BBMRI/Head of Biobanking-Graz (Austria)
- Eva Ortega-Paino, BBMRI, Lund University (Sweden)
- Nana Kongsholm, University of Copenhagen (DK)
- Klemens Kappel, University of Copenhagen (DK)
- Helen Yu, University of Copenhagen (DK)
Programme and presentations:
For participation in the event please use this registration form no later than Tuesday, 14 March 2017, 12:00 at the latest.