Indigenous peoples & participatory health research:
Previous page |
Health research involving Indigenous Peoples (IP) has generally been initiated and controlled by research institutions (RI); IP have often had little or no representation or rights with respect to the research process, or to the interpretation and use of the resulting data. Fundamental differences in perception between non-indigenous and indigenous peoples can affect the research process, and need to be clearly understood and taken into account before any research is started. These may include differing perspectives on what constitutes public and private life, notions of property, and the rights and interests of the group or collectivity as opposed to those of the individual (Tri-Council, 1998).
Health research involving Indigenous Peoples, whether initiated by the community itself or by a research institute, needs to be organized, designed and carried out in a manner that takes account of cultural differences, is based on mutual respect, and is beneficial and acceptable to both parties. The relationship should be one of collaboration, involving an express effort to balance the interests and responsibilities of the RI and the IP.
1.1 Aim and scope of the document
This document provides information on some guiding principles for management of collaborative health research, covering:
- the processes required at various stages of the research;
- the main issues to be negotiated between the RI and the IP;
- drawing up a research agreement;
- key ethical considerations that should govern all health research.
The lists of references and selected further reading, as well as the annexes, provide information on valuable resources on these and related subjects.
For the purposes of this document, the following definitions are used:
Although there is no internationally accepted definition of Indigenous Peoples, the following four criteria are often applied under international law, and by United Nations bodies and agencies, to distinguish Indigenous Peoples:
- residence within or attachment to geographically distinct traditional habitats, ancestral territories, and natural resources in these habitats and territories;
- maintenance of cultural and social identities, and social, economic, cultural and political institutions separate from mainstream or dominant societies and cultures;
- descent from population groups present in a given area, most frequently before modern states or territories were created and current borders defined;
- self-identification as being part of a distinct indigenous cultural group, and the display of desire to preserve that cultural identity.
The United Nations Development Programme (UNDP) notes that “despite common characteristics, no single accepted definition of Indigenous peoples that captures their diversity exists. Therefore, self-identification as indigenous or tribal is usually regarded as a fundamental criterion for determining indigenous or tribal groups, sometimes in combination with other variables such as language spoken and geographic location or concentration.” UNDP further extends their coverage to a much wider array of groups which are susceptible to being disadvantaged in the development process (UNDP, 2000).
a research process that endeavours to balance interests, benefits and responsibilities between the IP and the RI concerned, through a commitment to equitable research partnership. The term “participatory research” carries the implication that the entire process, from planning to reporting, will be transparent and accessible to all parties involved. This has also been referred to as “collaborative research.”
a group or groups of indigenous people which may share cultural, social, political, health, or economic interests, but not necessarily a particular geographic location.
a nationally or internationally recognized institution or organization (academic, government, non-profit), a primary objective of which is to undertake research, for the purposes of advancing health knowledge, facilitating health policy-making, or creating strategies and solutions to health problems and conditions relevant to the study population.
review and critique of a research proposal or text for publication by persons with similar (peer) or relevant background.
The document has two primary target audiences:
- Research institutions: to increase their awareness of the particularities of health research with IP, which are not adequately reflected in existing guidelines on the research process;
- Indigenous Peoples: to enhance their awareness of their interests and potential role within a collaborative health research process.
1.4 Implications for developing countries
The information in this document is based on experiences with IP in developed countries, with clearly identifiable community and leadership structures, access to independent infrastructure and resources, and a significant political voice. These conditions often do not apply in the developing world, where the following points should be taken into account.
- In some parts of the developing world, there is less clarity over the concept of “indigenous”. However, the provisions of this document can be applied to research involving any marginalized groups with sociocultural or political systems and practices distinct from those of the mainstream population in a country.
- Mechanisms for ethical review may be weak or non-existent in some developing countries. In addition, Indigenous Peoples and other marginalized populations in such countries are not likely to be familiar with research management procedures or the ethical requirements of the research process. The research institutions and national authorities have a particular responsibility to adhere strictly to high ethical standards, and to take special measures to inform their prospective indigenous partners about the provisions of national or international guidelines. Holding seminars on these issues at national, subnational, or local level has been suggested as a suitable way of beginning to address this information gap.
- Indigenous Peoples and other marginalized populations in developing countries frequently lack independent resources, infrastructure, and political representation. Many live in remote areas in conditions of poverty. They are unlikely to be in a position to contribute financially to a collaborative research process, as do some IP in industrialized countries. This should in no way affect their status as full collaborative partners.
- Every effort should be made to obtain information from the Indigenous Peoples or marginalized populations themselves on their health problems and priorities; only if direct access is problematic should third parties be approached in this respect.
- As noted by the WHO Advisory Committee on Health Research (ACHR) (WHO, 2002), there is a substantial international consensus that research should be done in developing countries only if it has potential benefits for the local population. Research in developing countries should be directed at health problems in those countries; the benefits of the research should be available to the research participants and to the broader community in which the research takes place. The means by which this will be ensured should be worked out between the investigators and representatives of the community prior to commencement of the research, and should be detailed in the initial informed consent process.
- WHO recognizes that special attention needs to be given to the ethical aspects of research in a developing country context and that ethical issues need to be addressed within the relevant national and social context. The context will differ between developed and developing countries, as well as among developing countries. The populations of very poor developing countries are especially vulnerable to economic exploitation by developed countries or outside organizations and corporations, whose primary mission is not related to the health of the people.
This is a particular concern in relation to genetic research. A meaningful informed consent process is one way of protecting against such exploitation (WHO, 2002). However, low educational levels, or cultural or language barriers, may mean that special care has to be taken to ensure that consent is truly informed and that individuals and groups thoroughly understand what is being proposed and why. Field-testing of the informed consent process may in some situations be indicated, and funding allocated for the purpose.
This situation is further complicated by the lack, in many developing countries, of strong regulatory mechanisms, such as ethics review boards or committees.2 An important priority for all developing countries is to develop the necessary regulatory structures to address both the scientific and the ethical dimensions of research. ANNEX A contains a summary of the essential provisions of international ethics guidelines, as well as a listing of some relevant national guidelines.
1 These definitions apply to terms as used in this document, and are not necessarily applicable in other contexts.
2 Recognizing this lack, Family Health International in the USA recently developed a Research Ethics Training Curriculum (Rivera et al., 2001). Its purpose is to increase the capacity in developing countries to address issues of research ethics. This work will be helpful for those wishing to expand their knowledge on human research ethics, or to operationalize these procedures.
Indigenous peoples & participatory health research:
| Next page