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

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.

From the Frontline: Strengthening Surveillance and Response Capacities of the Rural Workforce in the Asia-Pacific Region. How Can Grass-Roots Implementation Research Help?

Health systems in the Asia-Pacific region are poorly prepared for pandemic threats, particularly in rural/provincial areas. Yet future emerging infectious diseases are highly likely to emerge in these rural/provincial areas, due to high levels of contact between animals and humans (domestically and through agricultural activities), over-stretched and under-resourced health systems, notably within the health workforce, and a diverse array of socio-cultural determinants of health. In order to optimally implement health security measures at the frontline of health services where the people are served, it is vital to build capacity at the local district and facility level to adapt national and global guidelines to local contexts, including health systems, and community and socio-cultural realities. During 2017/18 James Cook University (JCU) facilitated an implementation research training program (funded by Australian Department of Foreign Affairs and Trade) for rural/provincial and regional health and biosecurity workers and managers from Fiji, Indonesia, Papua New Guinea (PNG), Solomon Islands and Timor-Leste. This training was designed so frontline health workers could learn research in their workplace, with no funding other than workplace resources, on topics relevant to health security in their local setting. The program, based upon the WHO-TDR Structured Operational Research and Training IniTiative (SORT-IT) consists of three blocks of teaching and a small, workplace-based research project. Over 50 projects by health workers including surveillance staff, laboratory managers, disease control officers, and border security staff included: analysis and mapping of surveillance data, infection control, IHR readiness, prevention/response and outbreak investigation. Policy briefs written by participants have informed local, provincial and national health managers, policy makers and development partners and provided on-the-ground recommendations for improved practice and training. These policy briefs reflected the socio-cultural, health system and disease-specific realities of each context. The information in the policy briefs can be used collectively to assess and strengthen health workforce capacity in rural/provincial areas. The capacity to use robust but simple research tools for formative and evaluative purposes provides sustainable capacity in the health system, particularly the rural health workforce. This capacity improves responses to infectious diseases threats and builds resilience into fragile health systems.