Abstract
BackgroundWhen conducting research with Indigenous populations consent should be sought from both individual participants and the local community. We aimed to search and summarise the literature about methods for seeking consent for research with Indigenous populations.MethodsA systematic literature search was conducted for articles that describe or evaluate the process of seeking informed consent for research with Indigenous participants. Guidelines for ethical research and for seeking consent with Indigenous people are also included in our review.ResultsOf 1447 articles found 1391 were excluded (duplicates, irrelevant, not in English); 56 were relevant and included. Articles were categorised into original research that evaluated the consent process (n = 5) or publications detailing the process of seeking consent (n = 13) and guidelines for ethical research (n = 38). Guidelines were categorised into international (n = 8); national (n = 20) and state/regional/local guidelines (n = 10). In five studies based in Australia, Canada and The United States of America the consent process with Indigenous people was objectively evaluated. In 13 other studies interpreters, voice recording, videos, pictures, flipcharts and “plain language” forms were used to assist in seeking consent but these processes were not evaluated. Some Indigenous organisations provide examples of community-designed resources for seeking consent and describe methods of community engagement, but none are evaluated. International, national and local ethical guidelines stress the importance of upholding Indigenous values but fail to specify methods for engaging communities or obtaining individual consent. In the ‘Grey literature’ concerns about the consent process are identified but no solutions are offered.ConclusionConsultation with Indigenous communities is needed to determine how consent should be sought from the community and the individual, and how to evaluate this process.Electronic supplementary materialThe online version of this article (doi:10.1186/s12910-016-0139-8) contains supplementary material, which is available to authorized users.
Highlights
When conducting research with Indigenous populations consent should be sought from both individual participants and the local community
International guidelines that were included were sourced from websites of organisations such as the United Nations Declaration on the Rights of Indigenous Peoples (UNDRIP); World Health Organisation (WHO); World Medical Association (WMA); and the Council for International Organisations of Medical Science (CIOMS)
National guidelines were identified through searching websites such as: The Lowitja Institute; the Australian Indigenous Aboriginal and Torres Strait Islander Studies (AIATSIS); and the Australian Aboriginal Health Info-net; the National Health and Medical Research Council (NHMRC) of Australia; the Health Research Council (HRC) New Zealand (NZ); the Canadian Institutes of Health Research (CIHR); and the National Institutes of Health (NIH), United States of America (USA)
Summary
When conducting research with Indigenous populations consent should be sought from both individual participants and the local community. There are an estimated 370 million Indigenous peoples residing in approximately 90 countries [1]. Many research studies have been conducted in Indigenous communities, non-Indigenous researchers. By working along-side Indigenous researchers and in continuous consultation with cultural advisors, some non-Indigenous researchers working with Indigenous communities are striving to be more ethically sound and culturally conscious, the inequality persists [4, 15]. In this review we include publications that describe specific guidelines for working with Indigenous populations, which may not capture research in low to middle income settings where the majority of the population is considered to be Indigenous. This review excludes reports that are not published in English
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