Indigenous knowledge around the ethics of human research from the Oceania region: A scoping literature review
Open Access
- 9 October 2021
- journal article
- review article
- Published by Springer Science and Business Media LLC in Philosophy, Ethics, and Humanities in Medicine
- Vol. 16 (1), 1-14
- https://doi.org/10.1186/s13010-021-00108-8
Abstract
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. 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. 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. 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.Keywords
Funding Information
- College of Medicine and Dentistry, James Cook University
- Fiji National University (None)
This publication has 45 references indexed in Scilit:
- Enhancing the scoping study methodology: a large, inter-professional team’s experience with Arksey and O’Malley’s frameworkBMC Medical Research Methodology, 2013
- Indigenous Populations: Decision Making and Informed Consent to ResearchAJOB Primary Research, 2012
- Pacific health research guidelines: the cartography of an ethical relationshipInternational Social Science Journal, 2009
- Vivien Spitz (2005) Doctors from Hell – The Horrific Account of Nazi Experiments on Humans.Ethik in der Medizin, 2007
- Doctors from hell: the horrific account of Nazi experiments on humansJCI Insight, 2006
- Scoping studies: towards a methodological frameworkInternational Journal of Social Research Methodology, 2005
- Fifty Years Later: The Significance of the Nuremberg CodeThe New England Journal of Medicine, 1997
- The Nazi Doctors and the Nuremberg Code: Human Rights in Human ExperimentationJAMA, 1993
- The Tuskegee Syphilis Study, 1932 to 1972: implications for HIV education and AIDS risk education programs in the black community.American Journal of Public Health, 1991
- The ‘Tuskegee Study’ of syphilis: Analysis of moral versus methodologic aspectsJournal of Chronic Diseases, 1978