Global Forum on Bioethics in Research – nearing 10 years of dialogue

1. Global Forum on Bioethics in Research – nearing 10 years of dialogue Sandra Realpe Ethics Officer, GFBR-Secretariat Xiuqin Wang Ethics Fellow, GFBR-Secretariat Edlyn Jimenez-Santos Ethics Fellow, GFBR-Secretariat Carel IJsselmuiden Director: COHRED

2. our purpose • to strengthen the protection of human participants in ‘international collaborative health research’ • by bringing together researchers, ethicists and other relevant stakeholders from low, middle and high income countries • to encourage dialogue on key ethical and related social, legal and public policy issues resulting from health research in international settings

3. rationale • increasing volume, complexity and global nature of health research • leading to continuously and rapidly changing ethical questions in design, management, ownership and impact of research involving human participants • that often outstrips the capacity of stakeholders • to keep up • to apply or adapt existing guidelines to new realities • to explore and resolve differences in opinions

4. dialogue … • to create an environment where conflicting, unresolved ethical problems can be explored without expectation of immediate resolution • in a manner that facilitates learning and the potential for all voices to be heard • with the aim of : • promoting collaboration among all involved in health research ethics, generating better informed arguments, and influencing ethical research practice • that is respectful of values of all involved and contributes to health and health equity globally

5. our purpose is NOT • to draft new guidelines • to arrive at ‘post conference’ statements • to become a normative organisation • to provide ‘training’

6. annual meetings

7. annual meetings

8. distribution of participants 40% of the countries in the world have been ‘represented’ at some point

9. distribution of participants: GFBR 1-8

10. Institut national de la santé et de la recherche médicale partners at this time

11. funding … • funding for meetings come from ‘funding partners’ and local host organisation(s) • funding for a ‘secretariat’ function come from a 2-year grant from the European Commission : 1/2007 - 12/2008 • a competitive grant mechanism – with COHRED as grant holder on behalf of partners (the FP6 – programme) • with some support coming from MRC UK and possibly from Wellcome Trust for work in 2009 • not a well-resourced organisation depending heavily on partners to provide ‘in kind’ support

12. secretariat • hosted by: COHRED • key areas of work • ensure ‘continuity’ between meetings • facilitate collaboration among partners • provide an institutional memory of the GFBR • identification of emerging ethical issues in international health research • provide website, participant database, case-study databank • advocacy for capacity building for health research ethics • policy papers, information materials, peer-reviewed publication • fellowship programme • fund raising for GFBR activities

13. secretariat • Governed by: • twice yearly meeting of Steering Committee of Partners • Managed by: • COHRED • Staffed by: • half-time ethics officer • full-time fellow from a developing country p.a. • Communicates through: • GFBR Newsletter • GFBR Website • Webmaster is Aga Khan Univ, Pakistan • www.gfbronline.com

14. looking ahead … • evaluation • secretariat function • improving impact (are we being heard ?) • extension of functions: • from dialogue to ‘platform’ for unheard voices ? • from annual meetings to capacity building and follow-up action ? • from global to global and regional meetings ? • deepening representativeness of partners • taking note of globalisation of research and research capacity • private sector inclusion (how ?) • solidifying income

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