CBO and academic participants agreed that the concepts of respect, beneficence, and justice could and should apply to the treatment of organizations that participate in research just as they apply to individual human subjects, although their implementation often differed when applied to CBO partnerships vs individual human subjects. Nearly every CBO participant emphasized ‘respect’ as a holistic ideal which went significantly beyond typical applications of ‘respect’ 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. Notions of beneficence and justice were largely inextricable from this holistic notion of respect.
The vast majority of participants situated respect as the foundation to any successful, ethical partnership between academic researchers and CBOs. In the Belmont Report, respect is grounded in individual autonomy and is primarily operationalized through informed consent. In CBO staff conceptualization, respect is an ongoing practice, and participants repeatedly emphasized that respect was demonstrated by the researcher’s willingness to practice being in purposeful, individual level relationships with CBO staff and clients.
CBO participants framed respect as an active process that took place within relationships. While participants were aware that research relationships are formally made between institutions (i.e., a subcontract from a university to a CBO), academic researchers (and their study staff) were judged on their ability and willingness to act respectfully within individual interpersonal relationships. Several participants expressed frustration with ‘arrogant’ researchers, and others noted the ways in which academic research could replicate hierarchies of oppression and power, either within the academic study team and/or in the relationship between the researcher and the CBO:
[P]eople expect service providers to bend over backwards to accommodate their oh so precious project, you know… So there’s an arrogance about–that they’re somehow imparting some gift to us, which is most of the time not the case… We’ve had research assistants … they just come chill in the drop-in center and it’s like, who are these people? There’s just sort of this privilege to feel like you just walk into this space and observe… A lot of privilege. A lot of white men researchers. And I even see that dynamic too with white men researchers who either employ research assistants who are super new…who aren’t from the community… And … I have observed those dynamics with the PI’s before, where they’re just–like they’re a gift from God. And that the research assistants are their minions and there’s a weird lack of respect that I’ve observed.
-Former director of HIV and reproductive health NGO
Several organizations described engaging in official or unofficial vetting practices to determine if researchers were capable of being respectful of an organization and their clients. Some CBOs would require researchers to fill out application forms, both to determine project fit and to subtly assert their intention to stand on an equal footing with the researcher. Others would encourage researchers to spend time volunteering before initiating a project together. This gave staff an opportunity to see how researchers would engage with clients and staff before committing to a prolonged project:
Whenever possible, we do our best to bring them with us. The first thing that someone who wants to work with us does, is observe us in action. They hang out in the drop-in center. They come with us to outreach. And we watch them. How do you interact with the people? Sometimes we might give them a little task at outreach. … “Hey, help us pass out or distribute some of this bread and pastry.” How do you interact with the people, are you respectful?
- Director, Harm Reduction Organization
For CBO staff, researchers could also demonstrate mutual respect through transparent communication and power sharing throughout the process of research conception, design, implementation, and dissemination. The precise details varied according to CBO mission and needs, but all participants emphasized that if the researcher’s approach to the partnership was characterized by cultural humility and a desire to meet CBO staff and clients where they were then the study was much more likely to be implemented smoothly. Many participants felt that they could evaluate the likelihood that a project would be a successful, mutually beneficial partnership based on the researcher’s initial question and their willingness or institutional ability to adapt it according to the CBOs needs.
A big piece of it is the approach and does the conversation start with, … “I’m really interested in this question and I’m stuck and I feel like you have the ability to help me think through it,” […] that I think is super productive and a great way to start. But if someone comes in and they’re like, “We have this great opportunity for [your CBO]. We’ll give you $1,000 to recruit ten people, or this is really a great opportunity for you to get involved in research,” or whatever, that’s not helpful. Then I just want to say, “That’s super and thank you and we have lots of opportunities, so we’re good”…. I think that community based organizations, for as difficult or problematic as we are, we do a lot of really good work and so for a researcher to approach the organization … showing some sort of respect or offering them some dignity, this is what you need to do with people in general.
-MSM CBO Director
Participants agreed that researchers had an obligation to minimize the potential harm to an organization and maximize the possible benefits. Some CBOs shared stories of specific harms that had occurred as a result of engaging in research projects. One organization reported losing a syringe exchange site after increased foot traffic from research recruitment brought the site to neighbor’s attention. More commonly, however, harm took the form of diverting scarce time or resources from the organization’s mission to the researcher’s needs. Many staff expressed frustration that their labor was frequently invisible or disrespected by academic researchers. Even supposedly ‘simple’ tasks, like referring participants to a study or putting up a poster often entailed extra work like explaining the project to participants or seeking out participants whom CBO staff thought might benefit from the study. Other CBO participants described feeling frustrated when research expanded beyond the originally agreed upon protocol, jeopardizing the CBO’s already scarce time, money, space, and human resources; often with very little professional or financial acknowledgment:
I’m sitting here …wracking my brain coming up with innovative programming on the ground level but you are presenting it as your research and you’re presenting it as, “These are the ideas that we, the researchers, the PhDs came up with.” It was not right, it made me feel devalued, and it really sent me through a small episode of trauma because here I am coming into the professional field, I’m still right at the entry level because I’m fresh out of school and I’m already being burned by researchers, by white researchers. And I try not to jump on the race card and talk about Tuskegee and all that, but it only reinforces those types of things when you’re actually experiencing it yourself in modern day times. Here you are, I’m HIV positive, I’m working in this field, I’m putting myself out there vulnerable, working all types of crazy hours for my community, and here you are and you’re basically using me as a pawn to diffuse information from my community and upstream it to you and you’re not downstreaming anything to us. We couldn’t get any additional resources for the program…There was never any opportunities to get any additional funding, any additional professional development, any additional anything other than having to completely reorganize our schedules when they came to town for the purpose of them absorbing research.
-Former HIV CBO staff
Beyond avoiding harm, CBO staff repeatedly emphasized that they felt researchers had an obligation to provide what benefits they could to the organization during the course of their partnership. The nature of this benefit depended on the individual CBO’s needs and preferences. Some staff pushed for academic acknowledgment, both to raise their organization’s profile and to compensate their staff for extra effort. Many spoke about the potential harms and benefits of study data. Disseminating study results in a way that was accessible and useful to the organization was especially important:
They come and hang out with us. They come to get to know the people we serve with us. We get the data back [...] and we can use the data for our purposes–grant writing, fundraising, setting up new programs, setting up new program sites. We can benefit from that too. We love to hear back from people, how did this go or what did you learn?
-Harm Reduction Director
Other CBO staff emphasized the harm that could come from poorly planned research or study designs that hadn’t involved community members in early stages of. Many expressed concerns about the ways in which ignorant research questions could harm their clients or ability to provide services by increasing stigma, particularly the risk of researchers reinforcing harmful stereotypes about race, class, and substance use due to a lack of cultural competence or humility:
I think the researchers need to interrogate … how their presence might shape the way that people might frame their experience […] it’s like we’re just used to telling white folks our horrible stories. It’s like slave narrative. It’s kind of like structure our narratives in a way that affirms some of the racist assumptions that might already be present.
-Black MSM CBO founder and director
The notion of justice infused nearly all of our conversations. Similar to the ways in which justice is conceived in the Belmont report, these conversations tended to follow two distinct threads: (1) Who is primarily receiving the benefits of a study, and who is primarily shouldering the harms? and (2) Is the institutional knowledge of a CBO treated equally to the academic knowledge of the researcher? CBO staff’s frustrations with academic researchers often resulted from feeling disrespected in situations where either or both of these questions were at play.
Both academics and CBO staff spoke about the unequal distribution of risks and benefits between organizations, clients, and researchers. Many felt that academic researchers shouldered a relatively small amount of the risks arising from the study, compared to the potential for coercion, retraumatization, or stigmatization faced by clients, and the risk CBO’s ran of losing already scarce time and resources with little in the way of remuneration, capacity building, or operational data to show for the experience.
Researchers blow my mind because they just come in with this hubris that they know everything or because they did some study once, that they’re suddenly an expert, which is really fucked up […] we got an email from some fucking organization that they said that they just up and decided that they were going to do a policy paper on decriminalization of prostitution and HIV and they were applying … for sixty thousand dollars and they wanted to know if we’d give them a letter of support…and I was like, “A) Fuck you, B)You guys don’t know anything about this. We’ve already been working towards this […]We’re already doing this work, you don’t need to go and take sixty thousand dollars out of the potential pockets of sex worker organizations to do this.
-Sex Work CBO staff member