“Researchers blow my mind”: Ethical research with community-based organizations

doi:10.21203/rs.3.rs-1451803/v1

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“Researchers blow my mind”: Ethical research with community-based organizations

https://doi.org/10.21203/rs.3.rs-1451803/v1

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Background: Public health research frequently relies on collaborations with community-based organizations, and these partnerships can be essential to the success of a project. However, while public health ethics and oversight policies have historically focused on ensuring that individual subjects are protected from unethical or unfair practices, there are few guidelines to protect the organizations which facilitate relationships with – and are frequently composed of – these same vulnerable populations. As universities, governments, and donors place a renewed emphasis on the need for community engaged research to address systematic drivers of health inequity, it is vital that the ways in which research is conducted does not uphold the same intersecting systems of gender, race, and class oppression which led to the very same health inequities of interest.

Methods: To understand how traditional notions of public health research ethics might be expanded to encompass partnerships with organizations as well as individuals, we conducted qualitative interviews with 39 staff members (executive directors and frontline) at community-based organizations that primarily serve people who use drugs, Black men who have sex with men, and sex workers across the United States from January 2016 – August 2017. We also conducted 11 in-depth interviews with academic researchers with experience partnering with CBOs that serve similar populations. Transcripts were analyzed thematically using emergent codes and a priori codes derived from the Belmont Report.

Results: 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 will differ when applied to CBOs vs individual human subjects.

Conclusions: Academic-CBO partnerships are likely to be more successful for both academics and CBOs if academic researchers work to center individual-level relationship building that is mutually respectful and grounded in cultural humility.

Public health

organizations

research ethics

vulnerable populations

research personnel

Public health researchers frequently collaborate with community-based organizations (CBOs), particularly when conducting research on stigmatized and/or illegal behaviors with hard to reach populations. These collaborations encompass a wide range of activities, from posting recruitment materials, to providing space for study activities, to formal fiscal arrangements to involve the CBO in recruitment, retention, or other study activities.

A substantial body of scholarship, law, and regulation has developed since the second world war which addresses the ethical issues involved in medical human subjects research [1–3]. More recently, many researchers and ethicists have voiced concern that the bioethical principles expressed in these laws and regulations, while well-considered for the purpose of protecting the rights and well-being of individual research participants, do not provide guidance in the conduct of research affecting entire communities[4–6]. Likewise, regulatory mechanisms (such as IRBs) tend to focus on the risks and benefits that might accrue to individual study participants rather than the risk and benefits which might accrue to communities[5].

The most significant response to these concerns has been the development of Community Based Participatory Research (CBPR), in which community groups and researchers collaborate as equals (Wallerstein & Duran, 2006). However, the vast majority of NIH-funded public health research in community settings does not involve CBPR collaborations, nor would this time- and resource-intensive approach necessarily be appropriate for many behavioral or biomedical studies. Further, while CBPR techniques is particularly valuable (and achievable) where the “community” at the center of the research is a self-defined community where membership is clear to both insiders and outsiders and clear voices exist who can ‘speak for the community, CBPR becomes difficult or impossible where the ‘community’ (or ‘population’) has been defined externally around a shared behavior rather than a shared identity.

The authors of the present study have all worked in HIV research and CBOs presently or historically and have heard about and witnessed the frustrations CBOs have with researchers. As researchers, we have all engaged in trained in the protocols that Institutional Review Boards [IRBs] and the Belmont Report (1979) have set forth for protecting human subjects, however, we have all noted the striking lack of ethical safeguards for CBOs in the research process. In the present study, we sought to understand how traditional notions of public health research ethics might be expanded to encompass the work public health researchers frequently do in partnership with community-based organizations.

We conducted 39 qualitative in-depth interviews with the directors and frontline staff of 25 community-based organizations (CBOs), and 11 in-depth interviews with researchers who had previously collaborated with CBOs. Participants were recruited across 14 metropolitan areas in the United States. Several recruitment strategies were utilized. A ‘CBO Expert Group’ was formed comprising the executive directors of 6 community-based organizations with national reputations who provide social and/or health services to one or more of people who use drugs, people engaged in sex work, and Black men who have sex with men. An initial field guide was designed with input from the CBO Expert Group and revised iteratively as interviewing progressed. CBO Expert Group members provided introductions to executive directors or other senior staff at other organizations serving the same populations. The first and last authors (RFM, PD) attended multiple conferences at which CBOs serving the three populations above were present and either presented preliminary data from the present study, and/or placed advertisements in conference materials about the study. Finally, we asked study participants to suggest other individuals or organizations who they felt would be able to contribute to this study, and, where appropriate, to make email introductions to those people. Interviews were conducted in-person in private or semi-private spaces, most commonly at the participant’s workplace, a coffee shop or other semi-private space chosen by the participant. A smaller number of interviews were conducted by telephone. All interviews were recorded and recordings were transcribed by a professional transcriptionist. Respondents were paid $50 immediately after informed consent and before commencing the interview. The study’s ethical protocol was approved by the University of California, San Diego Institutional Review Board.

Analysis

Members of the study team discussed emergent themes throughout the process of data collection. RFM and SK reviewed the transcripts and developed a codebook in discussion with the full team. Codes were a combination of emergent themes and concepts drawn from the Belmont report (i.e., respect, beneficence, justice). Transcripts were coded by RFM and SK, and the codebook was refined via iterative discussions with the full study team. The research team met frequently to discuss coding and data synthesis and to resolve differences in transcript coding.

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.

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

Beneficence

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

Justice

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

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 – was in alignment with the key principles of the Belmont Report (1979). Relationship influenced the researcher’s ability to perceive potential harms and benefits to individual research subjects, the CBO, and the general community, and hence their ability to create respectful, mutually beneficial research projects which minimized these harms and maximized benefits without creating additional burdens for the CBO. The consequences of the researcher’s previous actions – or a preceding institution or academic researcher - would frequently precede them in a community, dictating whether or not a CBO decided to engage in a relationship with them again.

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. In many ways, the researcher themself is absent from this project. Informed consent sheets at many universities are frequently standardized, with language provided and approved by an Institutional Review Board. 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 far 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.

Both CBO and academic 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 the majority of their ethical concerns on the imperative to minimize harm. Working with CBOs offers researchers the opportunity to more deeply consider the second obligation. Following the Belmont guidelines, researchers have the obligation to not only attend to the potential for CBO benefits, but to actively work to maximize the benefits a CBO could reasonably expect from participating in an academic research project.

Finally, the issue of justice arose repeatedly throughout our interviews. In many ways, justice is at the heart of researcher’s ethical obligation when working with CBOs and the communities they serve. To our participants, justice meant acknowledging the expertise that CBO staff brought to a partnership, acting 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.

The heart of successful public health research and practice is meeting people where they are. Academic researchers often rely heavily community-based organizations to facilitate those meetings. However, while ethical research guidelines exist for engaging with individual research subjects, no comparable guidelines exist for working ethically with organizations. Our interviews with CBO leadership and staff at organizations serving vulnerable populations across the United States suggest that the same principles of beneficence, justice, and respect can and should be equally applied to these partnerships just as they are to the relationship between researcher and human subject. Researchers who view themselves as individuals in relationship with organizations and their staff, rather than objective scientists executing a protocol and/or contract are more likely to successfully prioritize treating organizations with respect, beneficence, and justice. This in turn will likely lead to higher quality short and long-term research via mutual learning and sustained, long-term community relationships.

Ethics approval and consent to participate

This study was reviewed and approved by the Institutional Review Board at the University of California, San Diego. All participants provided informed consent prior to being interviewed. All methods were carried out in accordance with relevant guidelines and regulations.

Consent for publication

Not applicable

Availability of data and materials

The datasets analyzed for this study are not publicly available, as the nature of qualitative in-depth interviews makes fully de-identified data impossible. Data are available from the corresponding author on reasonable request, with appropriate participant privacy safeguards.

Competing interests

The authors declare that they have no competing interests.

Funding

This study was supported by the National Institutes of Public Health through grants R21DA03978 (PI: Davidson), K01MH112436 (PI: Fielding-Miller), and U01HD108787 (PI: Fielding-Miller). The funding body had no role in study design, data collection, analysis, or publication.

Author Contributions

RFM led the manuscript drafting, conducted the majority of the interviews, and led data analysis. SK and JB analyzed qualitative data and participated in the development of the conceptual framework. PD designed the study and oversaw all aspects of data collection and analysis. All authors contributed to data interpretation and the final manuscript.

Acknowledgments

We wish to thank the many organization staff who shared their time, wisdom, and expertise with us. This study would not have been possible without their generosity.

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Health UDo, Services H: National commission for the protection of human subjects of biomedical and behavioral research.(1979). The Belmont report: Ethical principles and guidelines for the protection of human subjects of research 2013, 45.
Brugge D, Kole A: A case study of community-based participatory research ethics: The healthy public housing initiative. Science and Engineering Ethics 2003, 9(4):485–501.
Flicker S, Travers R, Guta A, McDonald S, Meagher A: Ethical dilemmas in community-based participatory research: recommendations for institutional review boards. Journal of Urban Health 2007, 84(4):478–493.
Mikesell L, Bromley E, Khodyakov D: Ethical community-engaged research: a literature review. Am J Public Health 2013, 103(12):e7-e14.

No competing interests reported.

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You are reading this latest preprint version

“Researchers blow my mind”: Ethical research with community-based organizations

Status:

Version 1

Abstract

Introduction

Methods

Analysis

Results

Respect

-Former director of HIV and reproductive health NGO

- Director, Harm Reduction Organization

-MSM CBO Director

Beneficence

-Former HIV CBO staff

-Harm Reduction Director

-Black MSM CBO founder and director

Justice

-Sex Work CBO staff member

Discussion

Conclusion

Declarations

References

Additional Declarations

Status:

Version 1