Community Based Participatory Research in Global Health: Time to Provide Appropriate Ethics Training for Community Researchers

Abstract

Community-based participatory research (CBPR) and participatory action research (PAR) methodologies incorporate community engagement throughout the research process to reduce health inequities, support research capacity, and ensure that research supports community goals. To foster true reciprocity between academic institutions and community members, ethics training required by academic institutions should be culturally and linguistically adapted to partnering communities in low- and middle-income countries (LMICs). Current ethics resources have been adapted for non-academic populations. However, these ethics resources do not yet effectively allow community researchers in LMICs to develop their own framework or tailor trainings to their specific communities. A framework guiding the adaptation of ethics training methods specific to conducting CBPR and PAR in LMICs is necessary in developing research capacity in LMICs. Such adaptive ethics training models could also be beneficial for research conducted among marginalized populations in HICs.

Background

Community-based participatory research (CBPR) and participatory action research (PAR) methodologies apply community engagement and empowerment throughout the research process to develop meaningful social change, advance health equity, and build research capacity. ¹ To ultimately provide the resources to develop autonomous programs in LMICs, reciprocity between academic institutions and community members is crucial. ² Given the philosophy of CBPR and PAR, ethics training required by academic institutions should be culturally and linguistically adapted for partnering communities in LMICs. As global health continues to strive toward decolonization, ³ these adaptations are necessary to achieve equitable ethical standards in conducting research in LMICs. Just as we strive toward bilateral research, so too we should establish bilateral ethics training. Our team, consisting of community researchers, academics, anthropologists, and ethicists, has partnered in various research endeavors and witnessed the importance of formulaic ethics training, motivating the writing of this viewpoint—to help guide teams like ours for successful research.

Community adaptive ethics are in line with the requirements of the current Declaration of Helsinki, the internationally established consensus document for principles of research ethics. This document has evolved through revisions over the past 60 years to reflect the perspectives and issues raised by research conducted in LMICs. The Declaration explicitly guides researchers to enable communities to share their priorities and values and to participate in research design, implementation, and other relevant activities. ²⁰ Thus, it is time for research ethics training to become adaptive and reflect such best practices.

Current Practices for Ethics Training in Research

As academic institutions require investigators to complete ethics and human subject protection training to conduct research, true community participation cannot occur unless community partners complete this training as well. The Collaborative Institutional Training Initiative (CITI) was developed in 2000 to standardize training for researchers and covers ethical principles and human subject protections. Additionally, CITI training provides historical analysis of past abuses of research participants. ⁴ However, having been developed by the Global North, this information is often out of context or not applicable to the rest of the world.

Human subjects protection training methods similar to CITI have been adapted to increase research capacity through improved transparency, trust, knowledge of research, and community relevance.^5,6 In hopes of standardizing this practice, the US based Community Partnered Research Ethics Training (CPRET) was developed to tailor ethics training to be relevant and culturally sensitive in CBPR. ⁶ While human subjects training for community-engaged research has been adapted for various non-academic populations in high-income countries (HICs), such adaptive training is lacking for LMICs.^{5 -10} Additionally, there are multiple valuable ethics training programs available that are tailored to resource-poor settings such as the Global Health Training Institute’s Research Ethics Online Training and eLearning Modules, World Health Organization (WHO) Research Ethics, Research4life, and Training and Resources in Research Ethics Evaluation (TRREE).^{11 -14} While these resources aim to be globally applicable, they were not developed specifically for community researchers. Additionally, while designed to be relevant to all resource-limited countries, these resources do not have embedded designs for adapting to address the unique circumstances faced by different communities (Table 1). There continues to be a need for ethics training that allows researchers to build their own framework or adapt the training to their specific communities in alignment with the CBPR model.

Table 1.

Ethics Training Resources Tailored for LMICs.

	Global Health Training Institute—Research Ethics Online Training	Global Health Training Institute—eLearning Modules	WHO Research Ethics	TRREE
Description	Online ethics training applicable to resource-poor countries that was adapted from a WHO internal staff training course	Online, peer reviewed research training courses made to be globally applicable	Free online research ethics training for conducting research in low- and middle-income countries	Free online ethics training, co-developed with local collaborators to build capacities in Africa and other low- and middle-income countries
Drawbacks	Not specifically made for community researchers and not adaptable	Not specifically made for community researchers and not adaptable	Not specifically made for community researchers and not adaptable	Not specifically made for community researchers and only applicable to countries with a framework in place

Recommendations for Tailoring Ethics Training to LMICs

Historically, the lack of cultural adaptation for informed consent has been one of many factors contributing to unethical research practices and human participant abuses in LMICs.^{15 -17} Similarly, social and political factors specific to LMICs may influence how the ethical principles are understood. ¹⁸ True respect for participant autonomy requires that participants are fully informed about all possible benefits and burdens associated with participating in research. ¹⁹ Therefore, a successful ethics training method for CBPR and PAR should be understood fully by the community researcher to be able to communicate risks and benefits to their community. Linguistically and culturally adapting ethics training for CBPR and PAR in LMICs is vital in protecting the rights of community participants.

Given the history of global health research and its ties to colonialism in LMICs, there is an understandable lack of trust that can arise when partnering with high income country (HIC) research enterprises. ²⁰ As trust is a major contributing factor in CBPR outcomes, this can be a significant challenge for conducting CBPR or PAR in LMICs. ²⁰ Partnering with community experts to include relevant historical context in their human subject protection training provides 1 step toward repairing this trust, which is necessary for a sustainable partnership with academic institutions. Without addressing historical practices specific to countries that may have previously been marginalized through research, community members may be left vulnerable to further exploitation. While CITI training does analyze historical human research abuses, these examples should be tailored to LMICs to prevent further power imbalances when conducting community-engaged research.

Additionally, as CBPR and PAR seek equitable research designs that empower and uplift communities, the relevant research ethics guidelines should likewise establish principles of community empowerment through uplifting the unique values of communities. Yet, while research ethics are context-dependent, principles of basic human subject rights are not relativistic. Culture can sometimes conflict with human rights, for example in settings in which cultural norms toward women, sexual minorities, or marginalized groups can lead to violations of the rights of these populations. This occurs around the world in both HICs and LMICs. In any setting, community contributions to research ethics guidelines should be in conversation with established international bioethical principles of respect for persons and protection of vulnerable groups and individuals. Community adaptive ethics should reflect considerations of both local values and cultural norms as well as protections of human rights. Institutional review boards should take all of these factors under consideration when assessing community adaptive ethical approaches.

Finally, a common critique of CBPR is that it is sometimes burdensome for participating community members who do not always feel benefits from their research contributions. ¹⁹ Community guidance and leadership for adaptive ethics should be pursued without creating additional burdens for communities and when community members are asked to contribute to the development of adaptive ethics, their intellectual contributions and time should be respected and fairly and appropriately compensated.

Conclusion

Adaptation of ethics training methods specific to conducting CBPR and PAR in LMICs is necessary to developing research capacity in LMICs. Formal reviews should be conducted locally, regionally, and internationally, to better refine the existing successes in addressing the gap in ethics training for community researchers in LMICs and the current limitations of ethics training to be fully inclusive, representative, relevant, and empowering. These findings may be used to develop and validate adaptive CBPR ethics tools and training.