Indigenous knowledge around the ethics of human research from the Oceania region: A scoping literature review

Abstract

Background Many indigenous people have died or been harmed because of inadequately monitored research. Strong regulations in Human Research Ethics (HRE) are required to address these injustices and to ensure that peoples’ participation in health research is safe. Indigenous peoples advocate that research that respects indigenous principles can contribute to addressing their health inequities. This scoping literature review aims to analyze existing peer reviewed and grey literature to explore how indigenous values and principles from countries of Oceania are incorporated into HRE and the governance of research involving human participants. Methods A scoping literature review framework was used for this study. A search for peer reviewed and grey literature from Google, bibliographies, and electronic databases such as SCOPUS, SPRINGER, Medline (Ovid) and JBI Database of Systematic Reviews was conducted, limited to the years 2002–2020. Sixty (60) documents that focused on indigenous knowledge from Oceania region and HRE were included, from which key findings and themes were synthesized. Results Charting the data showed that more than half the eligible documents were peer-reviewed journal articles (54%). Other sources included: International Declarations on Human Research (8%); book chapters (8%); government documents (8%); HRE Guidelines or protocols (13%); news articles (7%) and PhD thesis (2%). The literature was from Australia, Cook Islands, Guam, New Zealand, Fiji, Samoa, Tonga and Vanuatu, some of which focused specifically on HREs in the Pacific Region. Issues emerging from the literature were grouped into five themes (i) indigenous and cultural principles of HRE; (ii) informed consent in indigenous settings in Oceania; (iii) vulnerability and minority status of indigenous populations exploited for research; (iv) research ethics governance for Oceania indigenous peoples; and (v) research ethics committees in Oceania. Respect, relationship building, and trust were priority indigenous HRE principles that encompass the principles of partnership, capacity building, reciprocity, and equality. Relationship building and trust imply the equal distribution of benefits for indigenous population and researchers. Conclusion Indigenous principles of HRE identified were interconnected and interdependent. Recommendations were to incorporate indigenous principles of research in HRE regulations and processes of all countries with indigenous populations. This is especially pertinent for emerging national research committees in LMIC countries, including Fiji and Tonga. Relationship building among researchers and indigenous populations is key to successful research with indigenous populations. HRE principles important for relationship building include respect that is reciprocal among researchers and indigenous people. Elements of the principle of respect highlighted are empathy, collaboration, sharing of benefits, reciprocity, appreciation, empowerment, protection, safety and awareness of culture and languages. Indigenous ontology from the Oceania region involves spirituality, connectedness to land, religious beliefs and a participatory approach to HRE and should be respected in research. An ethical governance mechanism of HRE is one that incorporates indigenous principles and applications for the purpose of maximizing the protection of the dignity and rights of indigenous peoples of Oceania.

Investigating the health status of primary school children in Tonga: Lessons learnt and reflections on field work in the Pacific Islands

“…The process of community engagement, submitting to the local community and stakeholders, as well as an underlying attitude of service, humility, respect, empathy and trust, were instrumental in mitigating the risk of poor cultural practice. 20 At all stages the research process was directed by and responsive to Tongan supervisors and adhering to, as well as embracing cultural protocol such as practices around sharing of food, generosity, prayers, appropriate clothing, collective singing and spending time together in Talanoa (story telling). 21 This ensured a mutual respect and warm relationship was maintained between researchers and community.…”

“…25 Taking time, reflecting and maintaining accountability to senior Tongan supervisors ensured the research experience was overall a positive experience, with the field work in primary school made possible because of the trust built during the first phases of the project. 20,21 One of the greatest achievements of this project was the fact that it was both interdisciplinary and intersectoral in the approach it took to measuring the health status of primary school children from a holistic perspective. The involvement of Tongan Ministries of Health and Education as well as the disciplines of paediatrics, ENT, vision and oral health alongside NGOs, meant the project had broad representation.…”

“…Efforts to keep decolonising the child health research space in the Pacific region will require commitment and openness to processes such as learning, relationship building, sharing stories, critical reflection, reciprocity, accountability and making use of practical guidelines developed specifically for research involving indigenous peoples. 7,10,20,21,28…”

“…Culture safety and reciprocity in this project were approached firstly through acknowledgement that cultural differences were a factor as the lead investigator was not Tongan. The process of community engagement, submitting to the local community and stakeholders, as well as an underlying attitude of service, humility, respect, empathy and trust, were instrumental in mitigating the risk of poor cultural practice 20 . At all stages the research process was directed by and responsive to Tongan supervisors and adhering to, as well as embracing cultural protocol such as practices around sharing of food, generosity, prayers, appropriate clothing, collective singing and spending time together in Talanoa (story telling) 21 .…”

“…It did not, however, negate the need to practise positionality: internally by reflecting on the influence of biases and privileges, and externally by submitting to Pacific leadership, and explicitly stating placement in the world as a non‐Pacific researcher 25 . Taking time, reflecting and maintaining accountability to senior Tongan supervisors ensured the research experience was overall a positive experience, with the field work in primary school made possible because of the trust built during the first phases of the project 20,21 …”