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4. Roles and responsibilities

Table of contents Disclaimer Acknowledgements Foreword Preface Acronyms used in this document About this document 1. Introduction 2. Guiding principles for participatory health research 3. Communicating about research 4. Roles and responsibilities 5. Preparing a health research agreement References Selected further reading Annex A: Key elements of research ethics procedures and guidelines Annex B: Example of a research agreement concluded between CINE and an indigenous community in Canada Annex C: Example of a form for obtaining individual informed consent Annex D: Example of collective consent obtained from an indigenous organization

Both the RI and the IP have the responsibility to enter into a fair, honest, and respectful relationship with each other, in a spirit of true collaboration.

4.1 Authority

The internal structures and governance processes of the IP must be recognized and respected. It should be understood that there are differing viewpoints in every community, and that the opinions of community leaders or councils may not be shared by everyone. In situations where there is known to be dissent within the community, it remains with the IP to decide who will speak on their behalf. Difficulties of this kind are likely to require a lengthy consultation period to identify who will represent a community and to ensure that all voices are heard.

The lines of authority within the RI must be clarified to the IP. Details of contact persons at a suitably senior level, and modes of access to them, should be made clear.

4.2 Conflict resolution

Among IP:
Where different representatives or authorities of the IP cannot agree, the RI should proceed only if adequate assurance is obtained from community leaders that this will not harm the IP, will generate the anticipated benefits, will not disrespect “local ethics”, and will not bias the results (for example through exclusion of a significant portion of the population), and that there is adequate support within the community to bring the research to a conclusion.

Between the IP and the RI:
one of the purposes of preparing a research agreement is to anticipate areas where conflict may arise. In the event of conflict, both parties have the right to expect that a fair and concerted effort will be made to resolve the issue through all available mechanisms, either separately or jointly. The involvement of ethics committees or other neutral parties may be required. The research should continue unless there has been a clearly demonstrated violation of ethical principles by the RI, or both parties agree that its continuation is no longer in the interests of the community. Concerns expressed by individuals must be directly addressed by the RI at community or individual level, and not exclusively through an umbrella IP organization.

4.3 Liaison

A critical aspect of the research partnership is ensuring that communication between the parties does not break down. Frequently, the IP will select a committee to follow the research and maintain communication with the RI. Ideally, the committee should represent all relevant community-controlled organizations, in order to avoid undue influence, control or coercion by any one group. This committee also facilitates and promotes the research activity, and keeps itself well informed on relevant issues. Where the IP lack independent funding, the RI may need to provide resources for this purpose, but with the clear understanding that this does not compromise the committee’s independence (Foster et al., 1998).

The specific responsibilities of this committee need to be defined according to the local context and type of research. They may include identification of appropriate researchers from the IP to work on the project, covering their training costs if funding permits, facilitating work in the community, playing a role in conflict resolution, and assuming administrative responsibilities in relation to IP involvement. A frequently used mechanism is for members of this committee, plus representatives of the RI, to form a joint steering committee for all purposes related to the management of the research.

4.4 Obligations

The RI has the following obligations:

• to enter into a fair and honest relationship with the IP concerned, and to accept the IP as full partners in the research;
• not to accept funding from any source that could be considered to be detrimental to the interests of indigenous peoples;
• to ensure that the lines of authority within the RI, and channels of communication with the IP, are clearly explained during initial discussions, and that those involved in the research or other designated personnel are available to IP representatives or community members to address any concerns or questions related to the research;
• to ensure that any research jointly undertaken should have clearly identified short-term and long-term health benefits for the IP. This may include arranging for the provision of health care where this is lacking, particularly in a developing country context;
• to inform the IP immediately if it considers that the research cannot, for reasons unforeseen at the outset, meet its original goals and objectives, and cannot provide the expected benefits to the IP. This contingency should be discussed between the parties as part of the research agreement, and a course of action decided on;
• where the IP do not possess the resources or capacity to provide infrastructural support or to negotiate independently, to ensure, together with the national authorities, that the IP are adequately involved, supported and protected in the research, in line with national and international ethics guidelines as well as the principles of this document;
• to provide opportunities for the IP to review and comment on research findings prior to publication;
• to uphold the highest standards of research and act in strict accordance with national and international ethical guidelines, as well as with local indigenous ethics.

The IP have the following obligations:

• to inform the RI immediately if, following internal consultations, they decide to withdraw from the research, and to provide the reasons for this decision;
• to facilitate the research activity by all possible means, to ensure that its anticipated benefits to the community will materialize.

4.5 Expectations

The RI can expect that:

• the research will be satisfactorily concluded with the agreed level of community participation and cooperation, provided that there are no changes in the agreed approach, expected outcomes, or anticipated benefits;
• where prior agreement designates the IP as the final owner of research data, requests by the RI for further use of the information will be considered and authorized by the IP. Such requests should be discussed and agreed in advance, and confirmed by the relevant research ethics mechanisms in accordance with usual research procedures.

The IP can expect that:

• the stated health benefits of the proposed research will be made available to them, and that suitable economic benefit-sharing agreements will be put in place;
• capacity-building and skills enhancement will form part of the research process;
• where the IP do not have their own resources and capacity, the RI or donors will assume all costs related to the research, without placing any limitation on the status of the IP as a full collaborative partner;
• participants in a joint research activity who have contributed in a significant capacity (e.g. through conceptual work, interpretation of data, writing up of findings) will be associated with the published findings, and either acknowledged in the manuscript or named as co-authors, as appropriate to the contribution made.
• Ideally, agreements between the IP and the RI should be made with the expectation of a commitment to a long-term and mutually beneficial relationship focused on the protection and promotion of indigenous health. Both partners should do everything possible to ensure the physical safety of all who participate in the research process.

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