The importance of respectful person-to-person relationships between researchers and community-based organizations is at the heart of our findings. CBO staff repeatedly discussed the role of not only their relationship with the researcher, but the researcher’s willingness to be ‘in relationship’ with their staff, organization, and clients. This willingness to be in relationship strongly influenced CBO staff’s desire to initiate or continue work with a researcher. The researcher’s ability and willingness to be in relationship with the CBO, their clients, and (by extension) the broader community is influenced by their respect for that community and their ability and desire to enact cultural humility to meet the community, CBO, and clients where they are. Willingness to be in relationship with CBOs and community was also the main determining factor as to whether or not an academic’s final impact on the organization – regardless of their intent – actually resulted in at the very least a lack of harm, and ideally in some benefit to the organization. Willingness to be in relationship influenced the researcher’s ability to perceive potential harms and benefits to individual research subjects, the community, and the CBO itself as a distinct entity. The impact of the researcher’s previous actions – or that of a preceding institution or academic researcher—would frequently precede them in a community, dictating whether a CBO decided to engage in a relationship with them again. While our data were collected in North America, these findings broadly align with research conducted internationally, suggesting that these findings are likely not unique to the United States based individuals we spoke with, nor to the specific ‘higher risk’ populations of which the CBOs we spoke with were composed of and/or served (Pratt et al., ).
The CBO staff and academic researchers who participated in our study expanded the notions of respect, beneficence, and justice to encompass the relational ethics of researcher-community interactions, beyond the principlist framework most commonly utilized in human subjects research regulations. Study participants emphasized the need to infuse these values throughout the entire research process, not just when considering the rights of individual human subjects who are eligible for enrollment into a study. This emphasis echoes the work of feminist social science methodologists, who have called on researchers to consider the praxis of research along with its intended theoretical impact—how the process of conducting research aligns with or attempts dismantle pre-existing systems of oppression (Lather, ).
Nearly every CBO participant emphasized ‘respect’ as a holistic ideal which went significantly beyond typical applications of as operationalized by institutional review boards and biomedical ethics training. CBO participants consistently framed their preferences, considerations, and frustrations with academic-CBO partnerships in the language of respect, and academic researchers who had experience partnering with CBOs echoed this emphasis. Study participants had a similarly expansive notion of the idea of justice, encouraging academic researchers to consider both the broader purpose and impact of their study, as well as the fairness with which their organization was being treated.
The expanded notion of respect aligns strongly with the relational framework as it evolved out of feminist calls to consider the positionality of the researcher as well as the research subject, and the importance of considering ‘care’ as a value in biomedical ethics. A key critique of the dominant principlist approach to human subjects research ethics is the way in which it situates the research project within a positivist perspective, tacitly assuming the possibility of researcher objectivity and the centrality of North American ethical standards. As Caroline Criado Perez  has compellingly argued, the failure to name the researcher as an actor within the research project also assumes the maleness and whiteness of the academic researcher. While gender did not emerge as a salient theme per se, the gendered dynamics of these relationships should not be ignored, particularly when considering the ways in which relational ethics emerged as a specifically feminist critique of traditional models of bioethics (Sherwin, ). The CBO space is frequently coded as one of ‘care’ work, and hence traditionally gendered as more feminine, while academia has historically been a male-dominated field (Steinberg and Jacobs, ; Wright et al., ). Indeed, although the vast majority of public health trainees at the undergraduate, graduate, and postdoctoral levels (both MD and PhD) are female [U.S. Department of Education ], senior researchers are significantly more likely to be white and male (Khan et al., ; Lauer et al., ).
In the Belmont Report, respect is primarily enacted by allowing individual human subjects the opportunity to consent with autonomy and full knowledge about the project’s potential risks and benefits. The researcher herself is typically absent from this process—albeit often named in the consent sheet as the individual controlling the research project. These Informed consent sheets are typically standardized across a research institution, with language provided and approved by an Institutional Review Board (IRB). The researcher’s role is to simply provide this form and allow the potential human subject to make their decision about participation. Conversely, CBO staff and researchers who had extensive experience working with CBOs centered the practice of respect around the actions and intentions of the researcher. Respect was demonstrated, practiced, and earned in ongoing human relationship between individual members of the study team, organizational staff, and the organization’s clients. Participants did express frustration when research projects expanded beyond the originally agreed upon protocol (analogous in some ways to violating informed consent), but this was secondary to their overwhelming frustration with researchers who did not act with humility, work towards cultural competence, and demonstrate their willingness to be ‘in relationship’ with the organization. This approach to ‘respect’ in human subjects research which centers individual autonomy was essentially anathema to respect as our participants described the process, instead they championed the need for the researcher to step into a dyadic, and dynamic, process of ongoing mutual discovery.
Both CBO and academic research participants repeatedly discussed the researcher’s obligation to not simply minimize harm, but to actively consider how they might create benefits for the CBO within the scope of the research project. While both minimizing harm and maximizing benefit are key aspects of beneficence, the pragmatic difficulty of maximizing benefit for individual human subjects frequently leads researchers to focus ethical concern on the imperative to minimize harm (non-malfeasance) (Mackenzie et al., ; Beebeejaun et al., ). As many of our participants pointed out, entering into ongoing relationship with CBOs as distinct entities offers researchers the opportunity to move beyond non-malfeisance and identify opportunities for beneficence, both to the community as a whole and to the CBO as a specific institution. Many participants linked this idea of beneficence, not simply non-malfeasance, to the broader notion of justice. To our participants, justice meant acknowledging the expertise that CBO staff brought to a partnership, that the researcher should act with cultural humility, and actively considering where the harms and benefits of the project were accruing. Moreover, several participants linked the notion of justice in academic-CBO partnerships to broader notions of racial, gender, and class justice. The obligation to enact justice in research translated to an obligation to consider social justice in broader society. When working with CBOs, the researcher has an obligation to consider how their own position within these power structures might influence not only their interactions, but also the research questions and approach they utilize. Participants emphasized that when conducting research on – or with – communities that have been made vulnerable by historic and ongoing injustices, researchers must consider not just the theory underpinning their academic research, but the praxis when engaging in the work of data collection. This can manifest in two distinct ways. First, will the benefits of the research-project-as-work be distributed fairly between the CBO and the researcher? In other words, will the tangible benefits which the CBO receives from supporting the research project be comparable to those which the researcher will accrue via publications, grants, conference talks, and opportunities for promotion? Second, will the way in which the research is conducted reinforce or dismantle pre-existing systems of oppression? Is the research structured to demand ‘slave narratives’—data that reinforces stigmatized understandings of communities that have been made vulnerable by historical and ongoing experiences of white supremacy, imperialism, and cisgendered heterosexual patriarchy? Or does the researcher take advantage of available CBO expertise to understand what type of evidence would be most useful to address root causes of health inequality for the community of interest?
Practically, academic researchers function within academic research institutions. As such, their ability to enact many of the suggestions made by study participants can be helped or hindered by institutional flexibility. For example, several CBOs described using volunteer time as a strategy to vet academic researchers. This is a justifiable strategy on the part of the CBOs. However, the practice can also privilege researchers with the financial security and free time to prioritize community volunteer work (i.e., affluent white men who engage in little to no care work). Universities and departments can counter this risk by providing institutional support for time spent relationship building, acknowledging that this may not result in immediate products. Institutional Review Boards (IRBs) and other ethical oversight entities can also create spaces to consider the importance of respectful relationships and tangible benefits to partner community-based organizations. For example, while study committees for the National Institutes of Health (NIH) are asked to comment on ethical concerns in grant proposals, there is no formal function available for questioning the potential burden that a project may place on community partners. Nor are reviewers asked to weigh the distribution of immediate benefits that accrue to investigators versus community organizations as a result of the project. Finally, while IRBs are required to include at least one member who represents “the community,” it has not always been clear which communities are represented by these IRB members or if their ability to advocate for ethical community or CBO involvement in research is appropriate (Klitzman, ). Further attention to relationship building and community engagement by ethical oversight entities at universities has the potential to help bridge the gaps between community interests and academic research priorities, conferring greater benefits to both researchers and CBOs.