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Responsibilities for ethical research in collaborations with the developing world
- Athula Sumathipala (23 August 1999)
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North-South Research Partnerships
- Ditch Townsend (25 August 1999)
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North-South research partnerships
- David Wilson (7 September 1999)
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North-South research partnerships
- Townsend (20 September 1999)
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Athula Sumathipala
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Tessa Tan-Torres Edejer1 has raised some important issues in collaborative research and the issues go very much beyond the issue of using placebo. Collaborations should be viewed as building bridges. It should be a true partnership with sharing of knowledge, expertise, skills, and resources. It has to be a mutually profitable exchange and not a dependent relationship which could be exploited. International collaboration should be based on the scientific merit of the projects, ethical considerations for local participants and mutual benefits for both worlds. Such projects should ensure a substantial contribution to the development of knowledge, skills, technology and scientific equipment to the developing world. No collaboration should be entertained solely for " economically cheap and easy research in the developing world." Therefore collaborations should not under estimate commendable contributions and commitments made, by the local professionals who have been conducting research under a lot of constrains. While acknowledging room for expansion and extension what should happen is to complement the work which has already done but not as alternatives. Furthering any work have to be collective efforts with the participation of local experts. In fact it is important to remember that some parts of the "developing world" are more developed than under developed parts of the developed world. From the local researchers point of view it is important to acknowledge that knowledge and scientific development going beyond national boundaries. Due to many historical reasons, the west has inherited a vast amount of knowledge, skills and expertise gathered from various parts of the world. Undoubtedly there is a definite place and use of collaborations but no one should underestimate the potentials for abuse and exploitation of scientific imperialism2. One essential tasks will be to develop a sound ethical frame work for the host country through these collaborations. Hierarchical position enjoyed by the medical fraternity in the developing world could have negative implications and would be a danger in terms of consent and undue compliance of participants. This has to be clearly borne in mind and the standard of informed consent has to be maintained without any compromise. In our own research in Sri Lanka we used an independent research assistant to obtain consent with and written information actively encouraging to use the rights of the participants to use their right to refuse participation if they do not wish to be in the study. Although the medical care is not the same, research standards should be the same through out the world3. Although there are fundamental human values which should form the basis of all bioethical reflections, there should be a regard to other cultural values upon which all societies will not necessarily agree4 Hence the role of expatriates colleagues should also be considered as they could be a reasonable link between the two worlds who will understand both worlds and be able to balance conflicting interests. However the main role of the collaborations should be to enhance the research capabilities in terms of local expertise and a local research culture. User involvement and empowerment of the participants also have a definitive place.Compensation for participation in any commercially exploited research should take the form of ensuring technology transfer, training, installation and ongoing maintenance of infrastructure5. Contribution towards service development should be linked to these projects and should be planned in advance. Research particularly in war torn countries, using traumatised individuals should be resisted unless they are coupled with treatments and interventions as they could only be re traumatised. 1. Tessa Tan-Torres Edejer1 North South research partnership: the ethics of carrying out research in developing countries. BMJ 1999;319:438- 41 2. Wilmshurst. P. ( Editorial) Scientific imperialism. BMJ. 1997;314:840-841 3. Halsey N. A. ( 1997) Ethics and international research. BMJ; 315: 965. 4. Subcommittee on population genetics of the UNESCO International Bioethics Committee. (1995). Report on Bioethics on Human Genetic research 5. Knopers. B.M, Hirtel. M, Lormeau. S. Ethical issues in international collaborative research on the Human Genome. Genomics; 1996;34:272-282. Dr. Athula Sumathipala Senior Registrar The Royal Marsden Hospital Fulaham Rd London SW3 6JJ |
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Ditch Townsend
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EDITOR - Whilst I would agree with Tessa Tan-Torres Edejer (14 August 1999) that today's North-South research collaboration is more often enacted in a politically correct vein, I believe that the fundamental issues remain unchanged and unlike her, I am all for 'outright condemnation'. It is not merely the practices and partnerships which have 'insidious, subversive ill effects'. Most of us seem blind to the outrageously unfair context: The author talks of a, '10/90 disequilibrium... to describe the situation where only 10% of the (money) spent annually on health research worldwide is directed to diseases which contribute 90% of the global burden of disease.' Can't others see the issue? If 90% of the global burden of disease is in the South, then 90% of research money should be spent there! This is the main ethical question; one which the Northern clinical and research communities are loathe to deal with. Not dealing with it is one of today's main medical ethical abuses. Tinkering with the ethics of North-South research partnerships within the status quo is nigh on irrelevant. Getting the, 'traditional citadels of tropical research in the North (to) move out to the tropics,' is also a marginal question. The author goes on to quote the Council for International Organisations of Medical Sciences: 'researchers working in developing countries have an ethical responsibility to provide treatment that conforms to the standard of care in the sponsoring country, when possible.' This too has been wrongly problematised by those concerned. The answer is to dramatically reduce standards of care in 'sponsoring countries', ie: the North. By removing the inexorable drive towards the never-ending goal of progress, we will also reduce another pressure Tan-Torres Edejer has captured; the problem that, 'Internal brain drain occurs, and local expertise is diverted from the more important areas to the less important areas of research.' I cannot fault Tan-Torres Edejer for her insights within the prevailing paradigm. But the paradigm is grossly positivist; blind to the baser inequities which we of the North have locked ourselves into - perhaps to the point of a crime against humanity. Already, I have abandoned my medical practice within a system which sickens me. I hope others will consider doing the same. Perhaps a time will come when I can not bear to be identified with perpetuators of the Northern medical paradigm and will also abandon my medical registration. We need a new paradigm: Appropriate, equitable clinical and research practice at the global level, not merely at the country or regional level. This will not put faith in an 'advancing science' or aim to 'uplift' others without 'downlifting' ourselves. 'Ditch' Townsend (Dr - for now) |
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David Wilson
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EDITOR- Edejer observes that North-South research collaboration is plagued by differing interpretations of ethical standards of doing research in developing countries, an example being the controversy over the Bangkok trial of short-course zidovudine for perinatal HIV-1 transmission [1]. One aspect of this controversy concerned the standard of care offered to patients participating in the study: should it be the best current treatment in the country of the sponsoring institution or the best local treatment? Medecins sans Frontieres provides primary health care to AIDS patients in Thailand and has reported that for one patient participating in the Bangkok trial no treatment of her symptomatic HIV infection at all was offered by the study hospital [2]. From our perspective it seems that neither side in the ethical debate was in touch with the real situation. Two key documents to be considered are the Declaration of Helsinki and a set of guidelines developed by the Council for International Organisations of Medical Sciences (CIOMS) in collaboration with the WHO. The Declaration of Helsinki was written by physicians and is being debated by the World Medical Association [3]. The group that developed the CIOMS guidelines was made up of representatives of ministries of health, members of medical and other health-related disciplines, health policy makers, ethicists, philosophers and lawyers [4]. Consumer representatives are absent from membership of either CIOMS or the World Medical Association. CIOMS Guideline No 8 prohibits research that involves subjects in underdeveloped communities unless it is responsive to the health needs and priorities of the community in which it is to be carried out. The Helsinki Declaration is silent on this issue. If research is to be responsive to the priorities of the community in which the research is to be carried out, then sponsoring institutions should ask community members what their priorities are. Edejer touches on this issue when she says "think local" in reference to addressing inequalities in research funding, but the need for advocacy for those subjects taking part in research in developing countries is not mentioned. Advocacy groups in Thailand are developing a watchdog role in monitoring ethical practices in research [5] but there is a lack institutional mechanisms for them to give feedback. David Wilson 1. Edejer T. North-South research partnerships: the ethics of carrying out research in developing countries. BMJ 1999; 319: 438-41 2. Wilson D. Effect of zidovudine on perinatal HIV-1 transmission and maternal viral load - Reply 2. Lancet 1999; 354: 156-57 3. Editorial. Declaration of Helsinki-nothing to declare? [editorial] Lancet 1999; 353: 1285 4. Council for International Organisations of Medical Sciences and the World Health Organisation. International ethical guidelines for biomedical research involving human subjects. Geneva: CIOMS, WHO, Geneva 1993 5. Suwanjandee J, Wilson D. Helsinki Declaration and Thailand. Lancet 1999; 354: 343 |
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Townsend
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Editor- Whilst I would agree with Tessa Tan-Torres Edejer (14 August 1999) that today's North-South research collaboration is more often enacted in a politically correct vein, I believe that the fundamental issues remain unchanged and unlike her, I am all for 'outright condemnation'. It is not merely the practices and partnerships which have 'insidious, subversive ill effects'. Most of us seem blind to the outrageously unfair context: The author talks of a, '10/90 disequilibrium... to describe the situation where only 10% of the (money) spent annually on health research worldwide is directed to diseases which contribute 90% of the global burden of disease.' Can't others see the issue? If 90% of the global burden of disease is in the South, then 90% of research money should be spent there! This is the main ethical question; one which the Northern clinical and research communities are loathe to deal with. Not dealing with it is one of today's main medical ethical abuses. Tinkering with the ethics of North-South research partnerships within the status quo is nigh on irrelevant. Getting the, 'traditional citadels of tropical research in the North (to) move out to the tropics,' is also a marginal question. The author goes on to quote the Council for International Organisations of Medical Sciences: 'researchers working in developing countries have an ethical responsibility to provide treatment that conforms to the standard of care in the sponsoring country, when possible.' This too has been wrongly problematised by those concerned. The answer is to dramatically reduce standards of care in 'sponsoring countries', ie: the North. By removing the inexorable drive towards the never-ending goal of progress, we will also reduce another pressure Tan-Torres Edejer has captured; the problem that, 'Internal brain drain occurs, and local expertise is diverted from the more important areas to the less important areas of research.' I can not fault Tan-Torres Edejer for her insights within the prevailing paradigm. But the paradigm is grossly positivist; blind to the baser inequities which we of the North have locked ourselves into - perhaps to the point of a crime against humanity. Already, I have abandoned my medical practice within a system which sickens me. I hope others will consider doing the same. Perhaps a time will come when I can not bear to be identified with perpetuators of the Northern medical paradigm and will also abandon my medical registration. We need a new paradigm: Appropriate, equitable clinical and research practice at the global level, not merely at the country or regional level. This will not put faith in an 'advancing science' or aim to 'uplift' others without 'downlifting' ourselves. Dr Townsend Technical Advisor - HIV/IDU Southeast Asia (location and organisation witheld for local security reasons) |
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