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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

Global Forum on Bioethics in Research – nearing 10 years of dialogue Sandra Realpe Ethics Officer, GFBR-Secretariat Xiuqin Wang Ethics Fellow, GFBR-Secretariat

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Page 1: Global Forum on Bioethics in Research – nearing 10 years of dialogue Sandra Realpe Ethics Officer, GFBR-Secretariat Xiuqin Wang Ethics Fellow, GFBR-Secretariat

Global Forum on Bioethics in Research –

nearing 10 years of dialogue

Sandra RealpeEthics Officer, GFBR-Secretariat

Xiuqin WangEthics Fellow, GFBR-Secretariat

Edlyn Jimenez-SantosEthics Fellow, GFBR-Secretariat

Carel IJsselmuidenDirector: COHRED

Page 2: Global Forum on Bioethics in Research – nearing 10 years of dialogue Sandra Realpe Ethics Officer, GFBR-Secretariat Xiuqin Wang Ethics Fellow, GFBR-Secretariat

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

Page 3: Global Forum on Bioethics in Research – nearing 10 years of dialogue Sandra Realpe Ethics Officer, GFBR-Secretariat Xiuqin Wang Ethics Fellow, GFBR-Secretariat

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

Page 4: Global Forum on Bioethics in Research – nearing 10 years of dialogue Sandra Realpe Ethics Officer, GFBR-Secretariat Xiuqin Wang Ethics Fellow, GFBR-Secretariat

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

Page 5: Global Forum on Bioethics in Research – nearing 10 years of dialogue Sandra Realpe Ethics Officer, GFBR-Secretariat Xiuqin Wang Ethics Fellow, GFBR-Secretariat

our purpose is NOT

• to draft new guidelines

• to arrive at ‘post conference’ statements

• to become a normative organisation

• to provide ‘training’

Page 6: Global Forum on Bioethics in Research – nearing 10 years of dialogue Sandra Realpe Ethics Officer, GFBR-Secretariat Xiuqin Wang Ethics Fellow, GFBR-Secretariat

annual meetings

GFBR1 Bethesda 1999Partnerships 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 2000Capacity 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 2002Bioethics and public health research, including ethical guidelines related to post-trial access to drugs

GFBR8 Vilnius 2007Fostering research ethics infrastructure in the developing world and transition societies

GFBR4 Brasilia 2002Ethics 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

Page 7: Global Forum on Bioethics in Research – nearing 10 years of dialogue Sandra Realpe Ethics Officer, GFBR-Secretariat Xiuqin Wang Ethics Fellow, GFBR-Secretariat

annual meetings

Page 8: Global Forum on Bioethics in Research – nearing 10 years of dialogue Sandra Realpe Ethics Officer, GFBR-Secretariat Xiuqin Wang Ethics Fellow, GFBR-Secretariat

40% of the countries in the world have been ‘represented’ at some point

distribution of participants

Page 9: Global Forum on Bioethics in Research – nearing 10 years of dialogue Sandra Realpe Ethics Officer, GFBR-Secretariat Xiuqin Wang Ethics Fellow, GFBR-Secretariat

distribution of participants: GFBR 1-8

Page 10: Global Forum on Bioethics in Research – nearing 10 years of dialogue Sandra Realpe Ethics Officer, GFBR-Secretariat Xiuqin Wang Ethics Fellow, GFBR-Secretariat

partners at this time

Institut nationalde la santé et de la recherche médicale

Page 11: Global Forum on Bioethics in Research – nearing 10 years of dialogue Sandra Realpe Ethics Officer, GFBR-Secretariat Xiuqin Wang Ethics Fellow, GFBR-Secretariat

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

Page 12: Global Forum on Bioethics in Research – nearing 10 years of dialogue Sandra Realpe Ethics Officer, GFBR-Secretariat Xiuqin Wang Ethics Fellow, GFBR-Secretariat

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

Page 13: Global Forum on Bioethics in Research – nearing 10 years of dialogue Sandra Realpe Ethics Officer, GFBR-Secretariat Xiuqin Wang Ethics Fellow, GFBR-Secretariat

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

Page 14: Global Forum on Bioethics in Research – nearing 10 years of dialogue Sandra Realpe Ethics Officer, GFBR-Secretariat Xiuqin Wang Ethics Fellow, GFBR-Secretariat

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

Page 15: Global Forum on Bioethics in Research – nearing 10 years of dialogue Sandra Realpe Ethics Officer, GFBR-Secretariat Xiuqin Wang Ethics Fellow, GFBR-Secretariat

tēnā koutou katoa !