Translational medicine and public health policy: lessons from biobanks Ethical, Legal, Social Issues (ELSI)

Brocher Foundation workshop, Switzerland

December 5 – 7, 2007

“Translational medicine and public health policy: lessons from biobanks Ethical, Legal, Social Issues (ELSI)”.

Chair : Anne Cambon-Thomsen, Toulouse, France –

Co-chairs: Bartha Maria Knoppers, Montreal, Canada; Jennifer Harris, Oslo, Norway

Workshop Programme

December 5, 2007, from 18.00: Get together at Hotel Longemalle followed by dinner at 20.00 .

December 6, 2007

8:30-9:00        INTRODUCTION

                        Welcome and introduction at Brocher Foundation

Philippe Ducor, Professor at Geneva University, Director of the Interdisciplinary Master in Life Sciences Law and member of the Foundation Brocher Scientific.Council

Workshop Objectives, format, introduction of participants

                         Anne Cambon-Thomsen, France

9:00-10:30      CONTEXTS REGULATORY FRAMEWORKS – Chair  Christina Sampogna  (OECD, France)

Regulatory Frameworks (Anthony Mark Cutter, UK)

                        Interoperability (Bartha Maria Knoppers, Canada)

10:00-10:30    Discussion (Leader Jane Kaye, UK)

10:30-11:00    Coffee Break

11:00-12:45    CONTEXTS ON CONSENT AND CULTURE – Chair Nouzha Guessous - Idrissi (Morocco)

                        Consent (Jan Helge Solbakk, UNESCO, Paris)

                        Populations,  cultures and genetic studies (Paolo Gasparini, Italy)

12.00 – 12.15 Communication by Susan Wallace (Canada): Consent for international

access to data and samples

12:15-12:45    Discussion (Leader Christina Sampogna,OECD, Paris)

12.45-14:00    Lunch

14:00-15:40    COMPLEX DISEASES AND DIFFERENTIAL CONSIDERATIONS. EXAMPLES : CANCER  - ALZHEIMER’S DISEASE – IMMUNE DISORDERS – Chair: Angela Brand (Germany)

14:00-14:20    State of the Art in Cancer (Pierre Hainaut, WHO, France)

14:20-14:40    State of the Art  in Alzheimer disease (Jean-Charles Lambert, France)

14:40-15:10    Susceptibility and protective genes in immune disorders (Erik Thorsby, Norway)

15.10 – 15.40  Discussion: (Leaders: Bartha Maria Knoppers, Canada and Sandrine Andrieu, France)

15:40-16:00    Coffee Break

16.00 – 17.30: ELSI ISSUES IN TRANSLATIONAL MEDICINE AND BIOBANKS FROM VARIOUS EXPERIENCES.

4 talks of 15 min + 30 min general discussion; discussion leader: Anne Cambon-Thomsen) Chair: Dominique Sprumont (Switzerland)

Presentations  in this session will be given by the following young investigators

Deborah Mascalzoni (Italy): Consent as a Multiple Step Process

Pierre Antoine Gourraud (France): « Sampling chromosomes »  challenges the “individual informed consent”

Emmanuelle Rial-Sebbag (France): From medical biobanks to research tools: new opportunity offered from the French legal perspective

Naomi Hawkins (UK): Human gene patents and translational research in genetic diagnostics

17.30 – 17.50 Summing up day 1: Jennifer Harris (Norway)

December 7, 2007

8:30-10.25      BIOREPOSITORIES (Chair: Carol George, UK)

8:30 - 8.50      Biorepository: NCI guidelines (Carolyn Compton, USA)

8.50 – 9.10     Public health issues and biobanks Angela Brand, Germany)

9.10 – 9.55      Three communications (15 min each) by the following young investigators

María Almeida (Spain) : The Spanish National DNA Bank

Catherine Heeney (UK) Genetic Databases and the Assessment of Public Health Benefits

Eleni Zika (Spain) Biobanking in Europe – prospects for networking

9.55 – 10.25    Discussion (Leader: Kurt Zatloukal, Austria)

10.25 – 10.45: Coffee break

10.45 – 12.45 : RISK COMMUNICATION, PUBLIC ATTITUDES AND PUBLIC CONSULTATION (Chair: O. Guillod (Switzerland)

10.45 – 11.05 Public understanding of susceptibility (David Bennet, The Netherlands)

10.05 – 11.25 Biobanking and "the public": a social science perspective (Mary Dixon-Woods, UK)

11.25 – 11.45 Perceptions of uncertainties in practices of DNA susceptibility testing for breast cancer (Marianne Boenink, The Netherlands)

11.45 – 12. 15 Two  communications (15 min each) by the following young investigators

Carolyn Tarrant (UK): Trust and confidence in biobank research: lessons from qualitative studies of participants

Ninette Rothmueller  (UK): Ethical considerations regarding biobanking research involving vulnerable populations

12.15 – 12.45 Discussion (Leader: Carol George, UK)

12.45 – 14.00: Lunch

14.00 - 15.30  CONCLUSION – Chair: Jan Helge Solbakk (UNESCO, Paris)

14:00-14:30    Lessons learned: From population biobanks to biorepositories and the reverse (Jennifer Harris, Norway)

14:30-15:00    General Conclusions, summing up and perspectives (Kurt Zatloukal, Austria))

15:00-15:30    Final discussion and publication perspectives (Anne Cambon-Thomsen)