(i) Informed Consent (IC) in Indigenous Settings | |
• Elements of IC are respect of dignity and autonomy of persons, transparent, un-intrusive, free of coercion, free and informative, protection of human rights and bioethics, collaborative and establishing a trusting relationship [5, 32]. | |
• Acceptable processes of IC for increased understanding; audiovisuals and graphics, provide options of oral or written forms. Read out loud then consent can be audio recorded. Conduct IC in the local language. IC may include family members or community [32, 48, 50] | |
(ii) Indigenous Principles of HRE | |
• Relationship building between researchers and indigenous participants should employ the values of respect and empathy, [26, 40], collaboration, sharing of resources, reciprocity, appreciation [34, 42, 60, 61, 73], knowledge of the culture [40] and identity, consider time and lived experiences [34, 60], humility, care and generosity [34]. | |
• Ethical research is research that empowers, provides social justice [40], emancipatory, decolonizing, protects [15, 74], gifting, knowing the language or dialect and build capacity [60]. | |
• Reciprocity equitable benefits to indigenous populations, joint ownership [22, 73] | |
• Ontology of indigenous people is defined as the point of view of spirituality and their interconnectedness to their land and the environment which require a participatory approach to ethical research. Participatory approach comprises the ethical principles of reciprocity, respect, equality, responsibility, survival and protection or safety, spirit and integrity, partnership, responsiveness and benefit [15, 22, 23, 40, 42, 60, 73, 94] | |
(iii) Vulnerability and minority status of indigenous populations exploited for research | |
• Common issues; marginalization, exploitation and lack of benefits [42, 46, 94]. | |
• Western paradigms are associated with expert knowledge while indigenous paradigms are associated with “lay knowledge”. Western ideas adopted in research methodologies cannot be applied to the understanding of Pacific Island culture [25, 27, 54, 60]. | |
(iv) Research Ethics Governance with Indigenous People | |
Principles commonly expressed in national HRE Guidelines are; | |
• Research designs are to include the principles of confidentiality, protection of human subjects’ dignity and safety, maximize efficiency, transparency, accountability, fair open and responsible conduct. Improve health and benefits aligned towards national priority areas [40, 80] | |
(v) Research Ethics Committees | |
• Stewardship roles within health research systems [36] | |
• Capacity building is needed to develop governance mechanisms. LMICs lack resources, have limited legal systems and little expertise in bioethics. Capacity building and institutional support for HRECs is needed yet lacking [20, 24].. | |
• HRECs cannot function on altruistic grounds only [3]. |