We found few publications that describe specific communication methods for seeking informed consent for Indigenous research and even fewer that evaluate participants’ understanding or preferences for the process [4, 5, 7–14, 29, 30, 33–77]. This may be explained by publication bias or simply reflect lack of attention to the consent process in these vulnerable populations [82, 93]. As mentioned previously there are over 90 countries with Indigenous populations [1], however this review is limited to reports published in English and might also exclude research from countries in which the majority of the population may considered to be Indigenous, but have not necessarily specified that they are working with an ‘Indigenous’ population.
The only original research study evaluating the consent process, Russell et al [33] had a very small study sample, with only twenty mothers who identified as Aboriginal. Researchers identified the need for multiple presentations of information, including by local Aboriginal people, and use of visual aids to enhance participants’ understanding of the proposed research. The role participants played within the Aboriginal community and the specific communities where the participants lived were not described, but it is unlikely that this is a representative sample of Aboriginal people living in Central Australia and hence the results may not be generalizable. Bull [34] did not evaluate understanding or preferences regarding the consent process by the community or individuals, but through discussions with community leaders concluded that researchers must establish a reciprocal relationship with the community, ensure that research is relevant to that community, respect cultural protocols and involve Aboriginal people in the conduct and reporting of the research. McCabe [35] describes a research approach that was badly received by the community and provides lessons about what to avoid, including reliance on telephone communication. The need for community input into consent forms, avoidance of scientific jargon, and inclusion of graphics were recommended to increase understanding [35]. Fong [36] assumes that Hawaiians’ failure to consent to use of their biological samples for future studies related to cultural beliefs relating to desecration of body parts but did not substantiate this theory. This illustrates the need for researchers to thoroughly understand cultural beliefs and practices. Baydala [37] used a novel consent process respecting local cultural protocol when seeking consent with elders of Aboriginal communities of the Alexis Nakota Sioux Nation, Alberta, Canada, but acknowledged that this process may be inappropriate among other First Nations or Inuit communities of Canada.
In articles that describe the consent process in detail, those with high recruitment typically involved local Aboriginal organisations and leaders in the project design and recruitment [38, 42, 48]. In The Lililwan Project, researchers employed local Aboriginal people as community navigators to disseminate study information, assist with recruitment of participants and support the research team in seeking written consent from parents and carers [38]. A plain English statement and consent form was read out and interpreted in their preferred language with the assistance of pictorial aides [38]. There was 95 % participation in this study, while using this method to seek consent [48]. In NZ there is a term Kaupapa M?ori Research, which encompasses the idea that research with M?ori populations should be driven by M?ori researchers [4, 39]. Wilson [42] emphasises the importance of researchers fostering equitable relationships with the community they are working with, however some studies we found do not appear to involve local Indigenous community members in this way [29, 30, 43]. There is often a communication gap between Indigenous and Non Indigenous communities, especially between them and researchers and health services [94]. Alison Hoy [95] raised concerns that this may result in Indigenous people being excluded from crucial projects because of the perception of exploitation. This may deny Indigenous people the opportunity of helping address major health disparities and benefiting from the results. Teams of non-Indigenous researchers often fail to acknowledge their different cultural backgrounds and philosophies on life compared to Indigenous people [96]. Indigenous and Non-Indigenous authors compare and discuss how the differences between their “two worlds” impacts on the quality of research, noting that certain attitudes to research with Indigenous communities can prevent it from being conducted in a culturally respectful way [4, 5, 34, 35, 42]. There is a language of inequality embedded even within today’s publications, with the idea that Non-Indigenous people are researchers and Indigenous people are the researched [4]. It is thus necessary for researchers to engage a community and foster relationships with leaders and local organisations [97].
A total of 38 research guidelines were included in this review, the majority of which define the term free, prior and informed consent, but few of which describe how this can be achieved. Some guidelines do not mention Indigenous communities as a special group for consideration and simply state that “language and cultural” differences must be accounted for [13, 66]. Others include special sections emphasising the vulnerability of Indigenous people with regard to research [10, 12, 14] or remind us of Indigenous Peoples rights [8, 9, 11].
Some research guidelines note the importance of seeking consent for research initially from a community leader or council of elders [5, 7, 8, 10–12, 49–51, 53, 54, 56–63, 65, 67–75, 77]. Some determine that only the community has control over what information may be publicly released [8]. The concept of community consent is debated and many questions arise regarding what comprises a community and who can represent a community [72, 98]. Tsosie [99] notes that in some communities a member may hold the duty to keep secret certain knowledge even from other community members and that this may prevent provision of consent or dissemination of results.
Of the national guidelines (?=?20), NZ appears to offer the most protection for the rights of M?ori, based on the spirit of the Treaty of Waitangi and Kaupapa M?ori Research [59–63]. Culturally significant language is embedded into the research guideline, which identifies that it is preferable for M?ori researchers to take charge of projects that are about or may affect M?ori people [59–63]. Australia and Canada also have culturally sensitive guidelines but it is difficult to translate values espoused into practice [49–58, 64, 65]. Neither of the USA guidelines specifically addressed the consent process for research with Indigenous people [66, 67]. The Tribal Epidemiology Centres report that research organisations have found it difficult to work with people who identify as American Indian or Alaskan Native due to their mobility, literacy, and language barriers [67]. Community Based Participatory Research with locally designed protocols has increased participation rates [67].