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Balancing Indigenous Principles and Institutional Research Guidelines for Informed Consent: A Case Study from the Peruvian Amazon
Sherman, M., Berrang-Ford, L., Ford, J. et al. (2012). AJOB Primary Research. Find PDF.
Background: Current literature emphasizes the need to implement informed consent according to indigenous principles and worldviews. However, few studies explicitly address how informed consent can be effectively and appropriately obtained in indigenous communities in accordance with research ethics guidelines. Methods: This article uses participatory rural appraisal methods to identify and characterize community preferences for informed consent in two indigenous communities in the Peruvian Amazon, using Canadian federal research regulations and McGill University’s Research Ethics Board as a case study to examine where institutional ethics guidelines constrain or support culturally appropriate notions of informed consent. Results: The study emphasizes the importance of tailoring informed consent procedures to community circumstances. Although both communities in this case study are located in the Peruvian Amazon, there were important distinctions between them, such as gender dynamics and social structure, which profoundly affected informed consent procedures. It is also important to consider the balance of collectivism and individualism at a community level in order to determine the role of individual and community consent. Conclusion: Research ethics guidelines generally allow for this contextualized approach. However, regulations still have the potential to constrain indigenous informed consent due to content requirements for informed consent forms, limited flexibility for modifications in the field, and requirements for individual consent.
Fieldwork in the Peruvian Amazon, in Pictures
Photographs taken by Mya Sherman, a first-year graduate student pursuing an M.A. in Geography during fieldwork in summer 2011 in the Peruvian Amazon. This fieldwork was part of the IHACC research program and used participatory methods to explore how researchers could best work with Shipibo and Shawi ethnic groups in future research collaborations.
Anna's Fieldwork in Iqaluit, September 2012
Photographs and text by Anna Bunce.
Food security and stomach illness related to water borne disease are two issues Northern Canadians grapple with on daily basis. The Indigenous Adaptation to Climate Change (IHACC) research group conducted household surveys of Iqaluit and Rigolet residents in an attempt to determine how climate change is contributing to food security and illnesses. Over three weeks, four IHACC researchers from the University Guelph and McGill worked with a team of 16 local surveyors in Iqaluit to administer these surveys in over 500 randomly selected homes. The aim of the project is to extend the use of the data beyond research and into local programming. The information will be shared with the Public Health Agency of Canada and the local government for future policy planning. IHACC also has funds reserved to develop locally specific programming to address issues revealed by the survey data.
Vulnerability of Indigenous Health to Climate Change: A Case Study of Uganda’s Batwa Pygmies.
Berrang-Ford, L. Dingle, K., Ford, J et al. (2012). Social Science & Medicine 75, 1067-1077. Find PDF.
The potential impacts of climate change on human health in sub-Saharan Africa are wide-ranging, complex, and largely adverse. The region's Indigenous peoples are considered to be at heightened risk given their relatively poor health outcomes, marginal social status, and resource-based livelihoods; however, little attention has been given to these most vulnerable of the vulnerable. This paper contributes to addressing this gap by taking a bottom-up approach to assessing health vulnerabilities to climate change in two Batwa Pygmy communities in rural Uganda. Rapid Rural Appraisal and PhotoVoice field methods complemented by qualitative data analysis were used to identify key climate-sensitive, community-identified health outcomes, describe determinants of sensitivity at multiple scales, and characterize adaptive capacity of Batwa health systems. The findings stress the importance of human drivers of vulnerability and adaptive capacity and the need to address social determinants of health in order to reduce the potential disease burden of climate change.