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

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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 !

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