The research team spent considerable time developing ethical protocols with communities and partner organizations, based on extensive working relationships with Indigenous communities and past guidelines of practice. The first task of the IHACC project was to develop an ethics protocol based on visits to the communities, meetings with local people and partner organizations. This allowed the IHACC team to determine local ethical systems, and understand perspectives on ethics and the risks faced by communities from the research. From this understanding the following ethical protocol was developed to manage these risks, in ways that are regionally specific. These ethical guidelines have been reviewed and approved by communities, Indigenous organizations and an environmental ethicist as locally appropriate. This protocol is also advised by ethics guidelines herein including those produced by IDRC and CIHR.
Key Aspects of the Ethical Protocol
i) Partnership agreements between scientists and communities and/or partner organizations that outline how the project will be conducted and reported on, and documents researcher obligations. This will include specification that communities will be involved at all stages of the project, that results will be reviewed and discussed with them first and prior to publication, and will outline key project outcomes.
ii) Full reporting on the clinical tests to individuals with the provision of medical treatment for those who test positive in lab tests.
iii) Guarantees of confidentiality in data collection, storage, and reporting, including data storage on a password protected computer that is only available to PIs and project researchers screened for access.
iv) The use of consent forms for all methods that specify the project aims and outline the rights of the participants and responsibilities of the researchers. Versions relevant for application in specific communities will be developed (i.e. oral and written, translated).
v) The potential use of password protected access to Indigenous Knowledge data banks.
vi) Formal ethics approvals will be obtained from relevant bodies.
vii) Co-authorship on publications for community members actively engaged in the project. Importantly, we view the ethics protocol as an ongoing negotiation between scientists, communities, and partner organizations: what is agreed in the beginning may not be appropriate at a later date and continuous consultation is required.
Published work used to inform the ethical protocol:
King M, et al. Indigenous health part 2: the underlying causes of the health gap. Lancet. 2009; 374(9683): 76-85
Gracey M, King M. Indigenous health part 1: determinants and disease patterns. Lancet. 2009; 374(9683): 65-75
Pearce T, Ford J, et al. Community collaboration and climate change research in the Canadian Arctic. Polar Research. 2009; 28(1): 10-27.
Ford J, & B. Smit. A framework for assessing the vulnerability of communities in the Canadian Arctic to risks associated with climate change. Arctic. 2004; 57(4): 389-400.
Pedersen D, et al. Healers, Deities, Saints and Doctors: Elements for the Analysis of Medical Systems. Soc Sci Med 1989;29(4):487-496
CIHR Ethics Office, Institute for Aboriginal Peoples’ Health. CIHR Guidelines for Health Research Involving Aboriginal People. CIHR; 2007.
Grenier L. Working with indigenous knowledge: a guide for researchers. Ottawa: IDRC; 1998.
Bavikatte K, et al. (eds) Bio-cultural Community Protocols: A Community Approach to Ensuring the Integrity of Environmental Law and Policy: UNDP and Natural Justice (pdf); 2009.