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
Carel IJsselmuiden
Director: COHRED

2. Introduction to the GFBR
outline
Introduction to the GFBR
Mission and Aims
Rationale
GFBR Meetings
GFBR Partners
GFBR Secretariat

3. 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

4. increasing volume, complexity and global nature of health research
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

5. 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

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

7. annual meetings GFBR1 Bethesda 1999
Partnerships between research sponsors and investigators involved in clinical trials in developing countries
GFBR6 Blantyre 2005
What happens when the research is over? Post-trial obligations of researchers and sponsors
GFBR2 Bangkok 2000
Capacity building for ethics review in developing countries
GFBR7 Karachi 2006
Ethical issues in research involving public health, health systems, and health services
GFBR3 Cape Town 2002
Bioethics and public health research, including ethical guidelines related to post-trial access to drugs
GFBR8 Vilnius 2007
Fostering research ethics infrastructure in the developing world and transition societies
GFBR4 Brasilia 2002
Ethics of Genomic Research
GFBR9 Auckland 2008
Ethics of research involving indigenous peoples and vulnerable populations
GFBR5 Paris 2004
Sharing the benefits from research in developing countries: equity and intellectual property
GFBR10 Santiago September 2009 Conflicts of interest in health research involving human participants

8. annual meetings

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

10. distribution of participants: GFBR 1-8

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

12. Permanent partners ‘Temporary’ partners
GFBR Partners
Permanent partners
‘funding’ [of annual meetings] (mostly from high income countries)
‘non-funding’ (mostly from low & middle income countries
‘Temporary’ partners
last year’s, current, and next year’s hosts
Founding partners
NIH/FIC and WHO hosted first GFBR in 1999
growing and changing over time

13. 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/ /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

14. 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

15. secretariat Governed by: Managed by: Staffed by: Communicates through:
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

16. extension of functions:
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

17. tēnā koutou katoa !