Research ethics committees in the Pacific Islands: gaps and opportunities for health sector strengthening

Denholm, Justin; Bissell, Karen; Viney, Kerri; Durand, A. Mark; Cash, Haley L; Roseveare, Christine; Merilles, Onofre Edwin; Harries, Anthony; Biribo, S

doi:10.5588/pha.16.0076

Cited by 7 publications

(11 citation statements)

References 15 publications

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“…Commentators have expressed concern regarding the optimal functioning of RECs in LMICs and that many researchers in LMICs do not always implement research ethics principles in their research (van Teijlingen and Simkhada 2012; Denholm et al 2017;Ana et al 2013). Challenges for RECs in LMICs include lack of standard operating procedures, insufficient training of members, lack of diverse membership, limited resources, and poor organization support (Sleem et al 2010;Silverman et al 2015;Milford et al 2006;Kadam and Karandikar 2012;Panichkul et al 2011).…”

Section: Introductionmentioning

confidence: 99%

Knowledge, Awareness, Attitudes, and Practices towards Research Ethics and Research Ethics Committees among Myanmar Post-graduate Students

Than

Htike

Silverman

2020

ABR

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Health research has increased during the last decade, which has enhanced the importance of research ethics. However, little is known regarding the knowledge, awareness, attitudes, and practices of investigators in Myanmar. To assess awareness, knowledge, and attitudes of postgraduates regarding research ethics and research ethics committees (RECs) and their informed consent practices and to determine the association between their responses and certain independent factors. We conducted a cross-sectional study using a questionnaire that was distributed to a convenience sample of postgraduates at the Defence Services Medical Academy in Myanmar. We used descriptive, t test, and chi-square statistics to analyze the data. Significance was set at p < 0.05. We obtained surveys from 204 participants, which included 177 MSc and 27 PhDs of whom 63.6% had performed research and 86.5% had prior ethics training. Regarding awareness, 92.2% were aware of an REC at their academy, but only 47.1% were "fully aware" of the functions of an REC and only 52.9% stated they were familiar with ethical principles that govern human subject research. More than 90% thought that research involving human subjects should be submitted to an REC and that postgraduates should have training on research ethics. However, several of their attitudes were sub-optimal; for example, 20.2% said that informed consent is only necessary from the community leader of a village rather than from the individual, 32.8% agreed it is acceptable to fabricate research data, and 33.0% believed that ethical review of research should be restricted to international collaborative research. Calculated mean total attitude scores were statistically significantly higher in postgraduates with PhDs compared with those with MSc and higher in those with knowledge of research ethics principles compared with those lacking such knowledge. Significant gaps exist among postgraduates regarding their knowledge, awareness, and attitudes regarding research ethics and RECs. We recommend that postgraduates receive further training in research ethics to ensure the ethical conduct of research. Further studies should be performed to determine the generalizability of our findings to other institutions in Myanmar.

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Section: Introductionmentioning

confidence: 99%

Knowledge, Awareness, Attitudes, and Practices towards Research Ethics and Research Ethics Committees among Myanmar Post-graduate Students

Than

Htike

Silverman

2020

ABR

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“… (iv) Research Ethics Governance with Indigenous People Principles commonly expressed in national HRE Guidelines are; • Responsibilities and cultural continuity [ 28 , 64 ] • Respect for persons [ 28 , 64 , 81 ] • Spirituality, integrity, equity and justice [ 40 , 64 ] • Relationships [ 28 , 40 , 64 , 80 ] • 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 ] • HREC is underdeveloped or lacking [ 20 , 24 ].. • Capacity building is needed to develop governance mechanisms. LMICs lack resources, have limited legal systems and little expertise in bioethics.…”

Section: Resultsmentioning

confidence: 99%

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

Lovo

Woodward

Larkins

et al. 2021

Philos Ethics Humanit Med

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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.

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“…Unfortunately, in many resource-poor countries, the local capacity for ethics committee review and oversight is underdeveloped. This is particularly the case in a number of Pacific Island nations where ethics committees have not been established [70]. This is a challenge for the optimal development of culturally appropriate and relevant research and the building up of local ethics committees should be an integral part of research development.…”

Section: Embedding Operational Research Within the Ntpmentioning

confidence: 99%

How Can Operational Research Help to Eliminate Tuberculosis in the Asia Pacific Region?

et al. 2019

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Broad multi-sectoral action is required to end the tuberculosis (TB) epidemic by 2030 and this includes National TB Programmes (NTPs) fully delivering on quality-assured diagnostic, treatment and preventive services. Large implementation gaps currently exist in the delivery of these services, which can be addressed and closed through the discipline of operational research. This paper outlines the TB disease burden and disease-control programme implementation gaps in the Asia-Pacific region; discusses the key priority areas in diagnosis, treatment and prevention where operational research can be used to make a difference; and finally provides guidance about how best to embed operational research within a TB programme setting. Achieving internationally agreed milestones and targets for case finding and treatment requires the NTP to be streamlined and efficient in the delivery of its services, and operational research provides the necessary evidence-based knowledge and support to allow this to happen.

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Research ethics committees in the Pacific Islands: gaps and opportunities for health sector strengthening

Cited by 7 publications

References 15 publications

Knowledge, Awareness, Attitudes, and Practices towards Research Ethics and Research Ethics Committees among Myanmar Post-graduate Students

Knowledge, Awareness, Attitudes, and Practices towards Research Ethics and Research Ethics Committees among Myanmar Post-graduate Students

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

How Can Operational Research Help to Eliminate Tuberculosis in the Asia Pacific Region?

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