Building up a framework for further research cooperation in bioethics

1. Building up a framework for further research cooperation in bioethics Evelyne Micollier, Ph.D Anthropology IRD (Research Institute for Development)

2. IRD CCDE (Consultative Committee on Professional Conduct and Ethics) and Guide of Good Practice • IRD-PUMC/CAMS (Peking Union Medical College/Chinese Academy of Medical Sciences) Project in Social Sciences • Points of discussion for further cooperative research in bioethics

3. I. CCDE (Consultative Committee on Professional Conduct and Ethics) of IRD (1) IRD: history and experience of research partnership in developing countries www.ccde.ird.fr Set up in 2000, main missions: contribute to -implementation/development of deontological rules specific to research and works of all kinds undertaken within IRD -formulation and taking into account of questions of ethical nature associated with all these activities

4. CCDE (Consultative Committee on Professional Conduct and Ethics) of IRD (2) Specificity compared to other research ethics committees in France: focus on ethics of partnership, encourage emergence and organisation of ethical debates related to research for development modalities of this development are identified as economic as well as technical, social, legal, political and ethical

5. Guide of Good Practice in Research for Development (1) • Methodological tool for better practice in multi-disciplinary research conducted in culturally diverse settings • Distinguishing feature of research for development: cooperative nature of research with developing countries, a cooperation that must comply with a principle of equity • Application of this principle acknowledged as not easy at all in current international context: Competition in science/technology, economic as globalization of exchanges and financing expands Cultural diversity liable to generate polarizations, tensions, even conflicts

6. Partnership in principle vs partnership in action Those ‘ethical’ rules are designed to help in the management of conflicts of interest However, conflicts of values liable to engender misunderstanding and compromise the research process may also question the very foundation of accepted rules on either side Help from consultative authorities from both sides and independent of one another is therefore needed to solve those issues

7. Guide of Good Practice in Research for Development (2) Principle 3 • wherever possible, ideally a project should be submitted to an (independent and impartial) ethics committee in both the developed countries and the developing countries • If no such committee does exist in the country concerned, research cooperation could offer an opportunity to discuss about the creation of such a committee

8. II. Social Sciences ProgramIRD-PUMC/CAMS Social Treatment of HIV/AIDS in China (UMR 145 at IRD, research unit specialized in HIV/AIDS medical and social treatment)

9. Scientific management Scientific Coordinators: PUMC/CAMS: Prof Liao Susu, Dept of Epidemiology, Public Health, MD, Ph.D IRD: Dr Evelyne Micollier, Dept Society and Health, Anthropology, UMR 145 Senior researcher: Prof Zhai Xiaomei, MD, Ph.D, director, Center for Bioethics, Dept of Social Sciences and Humanities

10. Research institutions in partnership -PUMC/CAMS (Peking Union Medical College/Chinese Academy of Medical Sciences), Beijing -IRD, France • Renmin University, Research Institute for Sociology of Sexuality, Beijing • CEFC (French Centre for Research on Contemporary China), French Ministry of Foreign Affairs, Hong Kong (financial support)

11. Thematic lines of research • Social response in the context of the implementation of a new policy scheme • Scientific/Traditional knowledge and practice: HIV/AIDS research, treatment and care • Gender and HIV/AIDS: clinical treatment/research, prevention and care Transversal lines: ethical issues (from principles to practice), local/global levels (from micro-social to macro-social scale) and globalization process

12. A selected point of discussion about research policy: a question of ‘ethical’ governance Development of HIV/AIDS (basic) medical research such as government-supported vaccine research is a controversial issue in China -while the HIV and AIDS epidemic is expanding and spreading into the general population -while still much needs to be done in operational clinical research, expanding treatment, testing and prevention. Therefore, more than 2/3 of estimated PLHA are not aware of their serological status. Vaccine development is questioned among scholars, experts, policy makers and civic actors as over the years, results show no major breakthrough.

13. III. Selected points of discussion for further cooperative research Thematic lines • Ethic Committees • Biomedical research on human beings • Biomedical research on animal • Organ transplantation, donation, and medical tourism

14. Ethic Committees: another question of ‘ethical governance’ Framework building for a national ethics committee and management of interactions between different administrative levels’ committees Biomedical research on human beings: -therapeutic misconception (clinical treatment vs clinical research trial) and balance between risks/benefits -has to be responsive to local needs, sustainable for local population, benefit to patients/research subjects

15. Biomedical research on animal Social and cultural factors impacting the building up of a framework for animal research ethics: • Local conceptualization of animal/life and implications for knowledge production in life sciences: changing perceptions of animal as a symbolic category, relationships human/animal/nature (environnement) and use • Transition from rural to urban societies • Social mobilisation of civic actors for animal and environmental protection • Overall ethical governance process: involvement of different stakeholders (officials, researchers, social groups, population at large)

16. Transversal lines of research and contextualization • Transnationalisation/delocalisation of biomedical research (clinical trials) and medical tourism (organ transplantation) • Ethical local/global governance Research contextualization in developing countries: greater risk of ‘softer’ legislation (principles) and loose implementation (gap between practice/principles), weaker voice of civic actors confronted by national/global economic interests and structural specificities of social/political systems, economic constraints of vulnerable patients/research subjects due to poverty

17. Cross-cultural variation in research ethics Universalistic, relativistic(culturalist), pluralistic (hybridized, glocal) views of ethics Fondamentals are universal while differences have to be negociated (medical ethics and ethics as a whole as a form of ‘local knowledge’) e.g. in China, in principle and practice, role of family members in the process of decision-making (Informed Consent)

18. However, obvious need for taking into account cultural factors without denying the impact of other factors (social, political, legal and economic environment) For instance in China, a number of research and medical ethical concerns are reinforced because of inequality in access to treatment and care within a social security system which currently does not protect vulnerable populations (Oct 2008: health reform in progress)

19. Methodological points -addressing ethical issues from multidisciplinary perspectives for an in-depth reflection, not only medical ethics but ethics as a whole as a form of knowledge and in terms of knowledge production Implications: setting up/implementing regulations for research in other disciplines than biological and medical sciences such as humanities and social sciences, environnemental and earth sciences

20. Methodological framework for future cooperation Building up a research framework: Chinese and French research actors/institutions, legal form: informal network or official partnership (MoU) Multidisciplinarity: In biological and medical sciences In human and social sciences: philosophy, law, sociology, anthropology Fieldwork/Study feasibility Building up a research cooperation based on mutual understanding aiming at benefiting to all stakeholders involved in the research process