Fielding‑Miller 

et al.
BMC Medical Research Methodology (2022) 22:237
https://doi.org/10.1186/s12874-022-01713-7

RESEARCH Open Access

“We’re already doing this work”: ethical

research with community‑based organizations
Rebecca Fielding‑Miller1*, Sarah Kim2, Jeanette Bowles3, Samantha Streuli1 and Peter Davidson1 

Abstract 
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 com‑
posed 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 professional 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 are a starting point for collaboration with CBOs, but
participants deepened them beyond traditional regulatory concepts to consider the ethics of relationships, care, and
solidarity. These concepts 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. More support from academic institutions and ethical oversight entities can enable more ethically grounded
relationships between academic researchers, academic institutions, and community based organizations.
Keywords:  Public health, Community-based organizations, Research ethics, Research personnel

Introduction
Community engagement is a core tenet of public health
practice and research. Health equity has always been a
*Correspondence: [email protected] concern for many public health professionals; however
1
University of California, 9500 Gilman Drive #0507, La Jolla, San Diego, CA the COVID-19 pandemic has led to increased visibility
92093, USA of disparate health outcomes for communities that have
Full list of author information is available at the end of the article been made socially vulnerable by historical and current

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Fielding‑Miller et al. BMC Medical Research Methodology (2022) 22:237 Page 2 of 10

medical mistreatment, economic disinvestment, and community or targeted population within the commu-
discriminatory legal frameworks. In the United States nity” (Beste et  al., [11]). Collaborations with CBOs can
these structural factors have most affected communities function as the primary means of community engage-
of color, with significantly worse effects for people who ment (CE) in a study or they may be just one aspect of
experience multiple forms of intersectional marginaliza- a multifaceted CEnR or CBPR project. These CBO-aca-
tion, such as gender and sexual minorities, people who demic collaborations encompass a wide range of activi-
use drugs, people with disabilities, and/or people expe- ties, from posting recruitment materials, to providing
riencing homelessness (Poteat et al., [1]; Jashinsky et al., space for study activities, to formal fiscal arrangements to
[2]). In the United States, many government entities have involve the CBO in recruitment, retention, or other study
generated policy documents emphasizing the importance activities.
of partnering with affected communities when work- A substantial body of scholarship, law, and regula-
ing to address these health disparities in COVID-19 and tion has developed since the second world war which
myriad other public health concerns (California Depart- addresses the ethical issues involved in medical human
ment of Public Health, [3]). subjects research (The Nuremberg Code, [12]; Associa-
Community engaged research (CEnR) in public health tion WM, [13]; The Belmont Report, [14]). This body is
takes many forms. Broadly defined, community engage- primarily grounded in the notion of principlist ethics,
ment is “the process of working collaboratively with and as best expressed by the Belmont Report (Hammers-
through groups of people affiliated by geographic proxim- ley, [15]) and codified in the United States federal regu-
ity, special interest, or similar situations to address issues lations which govern the institutional review boards
affecting the well-being of those people.”(Principles of (IRBs) tasked with providing ethical oversight for aca-
Community Engagement, [4]). This collaborative process demic research projects (Holm, [16]). The Belmont
is best understood as a spectrum rather than a single set Report frames the primary ethical obligations of medical
of practices, ranging from a complete lack of community research around the principles of respect, beneficence
involvement, to sporadically informing the community (and its corollary, nonmaleficence), and justice. In prac-
about the research on one end, to community based par- tice, these typically manifest as respect for participant
ticipatory research (CBPR) and community led research autonomy via informed consent, an attempt to maximize
initiatives on the other (Wallerstein and Duran, [5]; Key benefit to research participants and minimize harm, and
et  al., [6]). The CBPR approach emphasizes power shar- attention to ensuring that the benefits of the research do
ing and equitable collaboration between the researcher not primarily accrue to one population while the risks
and the community (Wallerstein and Duran, [5]; Waller- primarily accrue to another (The Belmont Report, [14]).
setin and Duran, [7]). However, the vast majority of There have been significant critiques of this model over
public health research in community settings does not the years. Academics and communities have described
involve CBPR collaborations, nor would this time- and many ways in which this top-down approach can mis-
resource-intensive approach necessarily be appropriate align with both the practice and spirit of CBPR projects
for many behavioral or biomedical studies as there is lit- (Banks et al., [17]; Shore, 2008). Others have questioned
tle institutional or research support for these approaches the epistemology of the framework itself, suggesting that
(Fregonese, [8]). Further, while CBPR techniques are par- a positivist notion of the ‘objective’ researcher engaged
ticularly valuable (and achievable) when the “community” in the search for pure truth is both inappropriate to the
at the center of the research is a self-defined community messy realities of research with human subjects, and
where membership is clear to both insiders and outsid- elides very real issues with implicit white supremacy,
ers and clear voices exist who can ‘speak for the com- imperialism, and cisgendered heteropatriarchy embed-
munity, CBPR becomes difficult or impossible where the ded in the history of medical research and bioethics
‘community’ (or ‘population’) has been defined externally (Douglas, [18]; Anderson, [19]; Holm, [16]). More prag-
around a shared behavior rather than a shared identity matically, the daily reality of conducting human subjects
(Minkler and Wallerstein, [9]; Israel et al., [10]). research, particularly projects that partner with commu-
The “community” with which researchers partner in nities or individuals that have been made vulnerable by
community engaged (CE) work can also manifest across structural forces, can often throw the difference between
a spectrum of formality, from a single individual who “wicked,” thorny ethical problems into contrast with the
is an acknowledged (or designated) community leader, neater, premeditated “compliance” ethics which aca-
to formal agreements between academic institutions demic researchers carefully document for institutional
and community-based organizations (CBOs). Commu- review boards (Heimer, [20]).To counter these issues,
nity-based organizations “are public or private not-for- other scholars have introduced the notion of ethics as a
profit resource hubs that provide specific services to the relational practice, considering care as a core component
 Fielding‑Miller et al. BMC Medical Research Methodology (2022) 22:237 Page 3 of 10

of working ethically with human subjects (Etherington, All authors have engaged in research partnerships
[21]; Ward and Gahagan, [22]). with CBOs or have been employed by CBOs, and as
Many researchers and ethicists have also voiced con- such approach this work with a personal commitment to
cern that the bioethical principles expressed in these advancing equitable academic-CBO partnerships.
laws and regulations, while well-considered for the pur-
pose of protecting the rights and well-being of individual Recruitment and study design
research participants, do not provide guidance in the This study used a modified grounded theory approach
conduct of research affecting entire communities (Brugge based in perspectivism, an epistemological lens which
and Kole, [23]; Flicker et  al., [24]; Mikesell et  al., [25]). acknowledges the multiple perspectives from which the
Likewise, regulatory mechanisms (such as IRBs) tend to researcher can approach and view a phenomenon as well
focus on the risks and benefits that might accrue to indi- as the critical need to incorporate the perspective of the
vidual study participants rather than the risk and benefits community under study, and hence the importance of
which might accrue to communities (Flicker et  al., [24]; utilizing multiple methodologies to understand the phe-
Shore, [26]; Banks et  al., [17]; Participants in the Com- nomenon (Tebes, [30]).
munity Engagement and Consent Workshop, [27]). We recruited leaders and frontline staff from commu-
The authors of the present study have all worked exten- nity-based organizations (CBOs) across the country. We
sively with CBOs, most typically in research related to specifically sought out CBOs that serve Black or Afri-
HIV, violence, health equity, or substance use, and we can American men who have sex with men (MSM), sex
have all heard about and witnessed the frustrations CBOs workers, and people who inject drugs. This decision was
have with researchers. As researchers, we have all trained largely driven by our personal experience as research-
in the protocols that Institutional Review Boards [IRBs] ers working in the fields of harm reduction and HIV
and the Belmont Report (1979) have set forth for protect- prevention. These three communities are frequently
ing human subjects, however, we have all noted the strik- labeled ‘high risk,’ or – more pointedly – “at high-risk
ing lack of ethical safeguards for CBOs in the research for the spreading of HIV infection” and as such are often
process. In the present study, we sought to understand targeted by academic researchers who are seeking to
how traditional notions of public health research ethics make their project more attractive for funding from the
might be expanded to encompass the work public health National Institutes of Health (NIH) (Institute of Medi-
researchers frequently do in partnership with commu- cine, [31]). We also sought out professional academic
nity-based organizations. researchers who had engaged in formal partnerships with
CBOs, or who had substantial experience with commu-
nity-engaged or participatory research.
Methods We used several strategies to recruit participants: A
Researcher positionality statement ‘CBO Expert Group’ was formed comprising the execu-
The authors recognize the power imbalance inherent in tive directors of 6 community-based organizations with
research relationships between academics and commu- national reputations who provide social and/or health
nity partners, including our own relationships with the services to one or more groups of people who use drugs,
organizations and individual respondents involved in the people engaged in sex work, and Black men who have sex
present study. While researchers have been historically with men. CBO Expert Group members provided intro-
positioned as “unmarked” arbiters of objectivity, femi- ductions to executive directors or other senior staff at
nist and critical race theory approaches have identified other organizations serving the same populations. The
the importance of researcher identity in the design, con- first and last authors (RFM, PD) attended multiple con-
duct, and interpretation of research (Haraway, [28]/1992; ferences at which CBOs serving the three populations
Hill Collins, [29]). RFM identifies as a white woman and above were present and we either presented preliminary
was a postdoctoral fellow under the supervision of PD data from the present study, and/or placed advertise-
at the time these interviews were conducted and is now ments in conference materials about the study. Finally,
an Assistant Professor. JB identifies as a white woman we asked study participants to suggest other individuals
and worked on this manuscript as a postdoctoral fellow or organizations who they felt would be able to contrib-
under the supervision of PD. SK identifies as an Asian ute to this study, and, where appropriate, to make email
woman and worked on this manuscript as an undergrad- introductions to those people. Due to the nature of the
uate research assistant under the supervision of RFM. SS complex power dynamics between CBOs and academic
identifies as a non-binary white woman and is currently researchers (as well as early career and senior academic
a postdoctoral fellow under the supervision of RFM. PD researchers) we only recruited study participants from
identifies as a white male and is an Associate Professor. organizations with which the authors had not worked in
Fielding‑Miller et al. BMC Medical Research Methodology (2022) 22:237 Page 4 of 10

the past. In the few instances in which pre-existing rela- protocol was approved by the University of California,
tionships did exist between a CBO or academic and study San Diego Institutional Review Board.
team member, that study team member did not conduct
the interview. Results
We designed the initial field guide with input from the We conducted 39 in-depth interviews with the directors
CBO Expert Group. The field guide was semi-structured and frontline staff of 25 community-based organizations
and was revised iteratively as interviewing progressed. (CBOs), and 11 in-depth interviews with researchers
The guide covered three main domains: (1)CBO staff who had previously collaborated with CBOs. Partici-
were asked to narrate their decision making process pants were recruited across 14 metropolitan areas in the
when evaluating requests to collaborate with academic United States and a wide range of organization types,
researchers – an approach based on ethnographic deci- including sex worker led advocacy groups, churches,
sion tree modeling (Gladwin, [32]), (2)CBO staff and halfway houses contracted with the federal bureau of
academic researchers were asked to narrate stories of prisons, syringe exchange programs with varying degrees
particularly good or bad collaborative experiences, and of access to legal documentation, formal umbrella organ-
(3)CBO staff were asked to comment on the utility of izations with the resources to host national conferences,
the Belmont framework (emphasizing respect, benefi- and community-based consultancies consisting of one to
cence, and justice) when considering ethical interactions two individuals. Participants who worked as professional
between CBOs and academic researchers. Interviews academic researchers were typically based at research
were face to face and were conducted in private or semi- intensive universities or had been previously based at a
private spaces, most commonly at the participant’s work- research-intensive university before transitioning to a
place, a coffee shop or other semi-private space chosen think tank or consultancy model.
by the participant. A smaller number of interviews were CBO and academic-research participants agreed that
conducted by telephone or video call. All interviews were the concepts of respect, beneficence, and justice could
recorded and recordings were transcribed by a profes- and should apply to the treatment of organizations that
sional transcriptionist. participate in research just as they apply to individual
human subjects. Although their implementation often
Analysis differed when applied to CBO partnerships vs individ-
Analysis was an iterative process, following Creswell’s ual human subjects. The individuals we spoke with also
‘spiral’ (Creswell and Poth, [33]). RFM and PD met reg- embraced a broader meaning of these principles, align-
ularly during the course of data collection to discuss ing them more closely with a relational rather than purely
emergent themes and to modify the field guide and sam- regulatory or principlist framework.
pling strategy as appropriate based on these. After RFM When we conducted comparative analyses between
and PD agreed saturation had been reached within the professional academic researchers and CBO staff, we
CBO and academic subgroups, and across the sample as found that participants were in concordance on all major
a whole, RFK, SK, and JB reviewed the transcripts and themes. Because our findings were the same across par-
developed a codebook in discussion with PD Codes were ticipant categories, our team made the deliberate deci-
a combination of emergent themes and concepts drawn sion to center CBO voices in the present manuscript.
from the Belmont report (i.e., respect, beneficence, jus- To that end, all illustrative quotes in the data presented
tice). Transcripts were coded by RFM, SK, and JB, and below are from CBO staff.
the codebook was refined via iterative discussions with
the full study team. All coding was done using MaxQDA Respect
software (VERBI Software, [34]). The research team met The vast majority of participants situated respect as the
frequently to discuss coding and data synthesis and to foundation to any successful, ethical partnership between
resolve differences in transcript coding. We periodi- academic researchers and CBOs. In the Belmont Report,
cally presented initial findings at conferences (generally respect is grounded in individual autonomy and is pri-
the same conferences from which we were recruiting) to marily operationalized through informed consent. In
engage in member-checking and gather feedback on our CBO staff conceptualization, respect is an ongoing prac-
preliminary conclusions. tice, and participants repeatedly emphasized that respect
was demonstrated by the researcher’s willingness to prac-
Regulatory ethics tice being in purposeful, individual level relationships
Respondents were given $50 to thank them for their time with CBO staff and clients.
and expertise immediately after informed consent and CBO participants framed respect as an active process
before commencing the interview. The study’s ethical that took place within relationships. While participants
 Fielding‑Miller et al. BMC Medical Research Methodology (2022) 22:237 Page 5 of 10

were aware that research relationships are formally made For CBO staff, researchers could also demonstrate
between institutions (i.e., a subcontract from a univer- mutual respect through transparent communication
sity to a CBO), academic researchers (and their study and power sharing throughout the process of research
staff ) were judged on their ability and willingness to act conception, design, implementation, and dissemination.
respectfully within individual interpersonal relationships. The precise details varied according to CBO mission
Several participants expressed frustration with ‘arrogant’ and needs, but all participants emphasized that if the
researchers, and others noted the ways in which aca- researcher’s approach to the partnership was character-
demic research could replicate hierarchies of oppression ized by cultural humility and a desire to meet CBO staff
and power, either within the academic study team and/or and clients where they were then the study was much
in the relationship between the researcher and the CBO: more likely to be implemented smoothly. Many partici-
pants felt that they could evaluate the likelihood that a
[P]eople expect service providers to bend over
project would be a successful, mutually beneficial part-
backwards to accommodate their oh so precious
nership based on the researcher’s initial question and
project, you know… So there’s an arrogance about-
their willingness or institutional ability to adapt it accord-
-that they’re somehow imparting some gift to us,
ing to the CBOs needs.
which is most of the time not the case… We’ve had
research assistants … they just come chill in the A big piece of it is the approach and does the con-
drop-in center and it’s like, who are these people? versation start with, … “I’m really interested in this
There’s just sort of this privilege to feel like you just question and I’m stuck and I feel like you have the
walk into this space and observe… A lot of privi- ability to help me think through it,” […] that I think
lege. A lot of white men researchers. And I even see is super productive and a great way to start. But if
that dynamic too with white men researchers who someone comes in and they’re like, “We have this
either employ research assistants who are super great opportunity for [your CBO]. We’ll give you
new…who aren’t from the community… And … I $1,000 to recruit ten people, or this is really a great
have observed those dynamics with the PI’s before, opportunity for you to get involved in research,”
where they’re just--like they’re a gift from God. And or whatever, that’s not helpful. Then I just want to
that the research assistants are their minions and say, “That’s super and thank you and we have lots of
there’s a weird lack of respect that I’ve observed. opportunities, so we’re good”…. I think that commu-
-Former director of HIV and reproductive health nity based organizations, for as difficult or problem-
NGO atic as we are, we do a lot of really good work and
so for a researcher to approach the organization …
Several organizations described engaging in official
showing some sort of respect or offering them some
or unofficial vetting practices to determine if research-
dignity, this is what you need to do with people in
ers were capable of being respectful of an organization
general.
and their clients. Some CBOs would require research-
-MSM CBO Director
ers to fill out application forms, both to determine pro-
ject fit and to assert their intention to stand on an equal
footing with the researcher. Others would encourage Beneficence
researchers to spend time volunteering before initiat- Participants agreed that researchers had an obliga-
ing a project together. This gave staff an opportunity to tion to minimize the potential harm to an organiza-
see how researchers would engage with clients and staff tion and maximize the possible benefits. Some CBOs
before committing to a prolonged project: shared stories of specific harms that had occurred as a
result of engaging in research projects. One organization
Whenever possible, we do our best to bring them
reported losing a syringe exchange site after increased
with us. The first thing that someone who wants
foot traffic from research recruitment brought the site
to work with us does, is observe us in action. They
to neighbors’ attention. More commonly, however, harm
hang out in the drop-in center. They come with
took the form of diverting scarce time or resources
us to outreach. And we watch them. How do you
from the organization’s mission to the researcher’s
interact with the people? Sometimes we might give
needs. Many staff expressed frustration that their
them a little task at outreach. … “Hey, help us
labor was frequently invisible or disrespected by aca-
pass out or distribute some of this bread and pas-
demic researchers. Even supposedly ‘simple’ tasks, like
try.” How do you interact with the people, are you
referring participants to a study or putting up a poster
respectful?
often entailed extra work like explaining the project to
- Director, Harm Reduction Organization
Fielding‑Miller et al. BMC Medical Research Methodology (2022) 22:237 Page 6 of 10

participants or seeking out participants whom CBO that too. We love to hear back from people, how did
staff thought might benefit from the study. Other CBO this go or what did you learn?
participants described feeling frustrated when research -Harm Reduction Director
expanded beyond the originally agreed upon protocol,
Other CBO staff emphasized the harm that could
jeopardizing the CBO’s already scarce time, money,
come from poorly planned research or study designs that
space, and human resources; often with very little pro-
hadn’t involved community members in early stages of.
fessional or financial acknowledgment:
Many expressed concerns about the ways in which igno-
I’m sitting here …wracking my brain coming up with rant research questions could harm their clients or ability
innovative programming on the ground level but to provide services by increasing stigma, particularly the
you are presenting it as your research and you’re risk of researchers reinforcing harmful stereotypes about
presenting it as, “These are the ideas that we, the race, class, and substance use due to a lack of cultural
researchers, the PhDs came up with.” It was not competence or humility:
right, it made me feel devalued, and it really sent
I think the researchers need to interrogate … how
me through a small episode of trauma because here
their presence might shape the way that people
I am coming into the professional field, I’m still right
might frame their experience […] it’s like we’re just
at the entry level because I’m fresh out of school and
used to telling white folks our horrible stories. It’s
I’m already being burned by researchers, by white
like slave narrative. It’s kind of like structure our
researchers. And I try not to jump on the race card
narratives in a way that affirms some of the racist
and talk about Tuskegee and all that, but it only
assumptions that might already be present.
reinforces those types of things when you’re actually
-Black MSM CBO founder and director
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 Justice
types of crazy hours for my community, and here you The notion of justice infused nearly all our conversa-
are and you’re basically using me as a pawn to dif- tions. Similar to the ways in which justice is conceived
fuse information from my community and upstream in the Belmont report, these conversations tended to
it to you and you’re not downstreaming anything to follow two distinct threads: (1) Who is primarily receiv-
us. We couldn’t get any additional resources for the ing the benefits of a study, and who is primarily shoul-
program…There was never any opportunities to get dering the harms? and (2) Is the institutional knowledge
any additional funding, any additional professional of a CBO treated equally to the academic knowledge of
development, any additional anything other than the researcher? CBO staff ’s frustrations with academic
having to completely reorganize our schedules when researchers often resulted from feeling disrespected
they came to town for the purpose of them absorbing in situations where either or both questions were at play.
research. Both professional academic researchers and CBO staff
-Former HIV CBO staff spoke about the unequal distribution of risks and benefits
Beyond avoiding harm, CBO staff repeatedly empha- between organizations, clients, and researchers. Many
sized that they felt researchers had an obligation to pro- felt that academic researchers shouldered a relatively
vide what benefits they could to the organization during small amount of the risks arising from the study, com-
their partnership. The nature of this benefit depended on pared to the potential for coercion, retraumatization, or
the individual CBO’s needs and preferences. Some staff stigmatization faced by clients, and the risk CBO’s ran of
pushed for academic acknowledgment, both to raise their losing already scarce time and resources with little in the
organization’s profile and to compensate their staff for way of remuneration, capacity building, or operational
extra effort. Many spoke about the potential harms and data to show for the experience.
benefits of study data. Disseminating study results in a Researchers blow my mind because they just come
way that was accessible and useful to the organization in with this hubris that they know everything or
was especially important: because they did some study once, that they’re sud-
They come and hang out with us. They come to get denly an expert, which is really fucked up […] we got
to know the people we serve with us. We get the data an email from some fucking organization that they
back [...] and we can use the data for our purposes- said that they just up and decided that they were
-grant writing, fundraising, setting up new programs, going to do a policy paper on decriminalization of
setting up new program sites. We can benefit from prostitution and HIV and they were applying … for
sixty thousand dollars and they wanted to know if
 Fielding‑Miller et al. BMC Medical Research Methodology (2022) 22:237 Page 7 of 10

we’d give them a letter of support…and I was like, work of feminist social science methodologists, who have
“A) Fuck you, B)You guys don’t know anything about called on researchers to consider the praxis of research
this. We’ve already been working towards this […] along with its intended theoretical impact—how the pro-
We’re already doing this work, you don’t need to go cess of conducting research aligns with or attempts dis-
and take sixty thousand dollars out of the potential mantle pre-existing systems of oppression (Lather, [36]).
pockets of sex worker organizations to do this. Nearly every CBO participant emphasized ‘respect’ as
-Sex Work CBO staff member a holistic ideal which went significantly beyond typical
applications of as operationalized by institutional review
boards and biomedical ethics training. CBO participants
Discussion consistently framed their preferences, considerations,
The importance of respectful person-to-person rela- and frustrations with academic-CBO partnerships in the
tionships between researchers and community-based language of respect, and academic researchers who had
organizations is at the heart of our findings. CBO staff experience partnering with CBOs echoed this emphasis.
repeatedly discussed the role of not only their relation- Study participants had a similarly expansive notion of the
ship with the researcher, but the researcher’s willingness idea of justice, encouraging academic researchers to con-
to be ‘in relationship’ with their staff, organization, and sider both the broader purpose and impact of their study,
clients. This willingness to be in relationship strongly as well as the fairness with which their organization was
influenced CBO staff ’s desire to initiate or continue work being treated.
with a researcher. The researcher’s ability and willingness The expanded notion of respect aligns strongly with the
to be in relationship with the CBO, their clients, and (by relational framework as it evolved out of feminist calls
extension) the broader community is influenced by their to consider the positionality of the researcher as well as
respect for that community and their ability and desire the research subject, and the importance of consider-
to enact cultural humility to meet the community, CBO, ing ‘care’ as a value in biomedical ethics. A key critique
and clients where they are. Willingness to be in relation- of the dominant principlist approach to human subjects
ship with CBOs and community was also the main deter- research ethics is the way in which it situates the research
mining factor as to whether or not an academic’s final project within a positivist perspective, tacitly assuming
impact on the organization – regardless of their intent – the possibility of researcher objectivity and the central-
actually resulted in at the very least a lack of harm, and ity of North American ethical standards. As Caroline
ideally in some benefit to the organization. Willingness Criado Perez [37] has compellingly argued, the failure
to be in relationship influenced the researcher’s ability to name the researcher as an actor within the research
to perceive potential harms and benefits to individual project also assumes the maleness and whiteness of the
research subjects, the community, and the CBO itself as academic researcher. While gender did not emerge as a
a distinct entity. The impact of the researcher’s previous salient theme per se, the gendered dynamics of these
actions – or that of a preceding institution or academic relationships should not be ignored, particularly when
researcher—would frequently precede them in a commu- considering the ways in which relational ethics emerged
nity, dictating whether a CBO decided to engage in a rela- as a specifically feminist critique of traditional models of
tionship with them again. While our data were collected bioethics (Sherwin, [38]). The CBO space is frequently
in North America, these findings broadly align with coded as one of ‘care’ work, and hence traditionally gen-
research conducted internationally, suggesting that these dered as more feminine, while academia has historically
findings are likely not unique to the United States based been a male-dominated field (Steinberg and Jacobs, [39];
individuals we spoke with, nor to the specific ‘higher risk’ Wright et  al., [40]). Indeed, although the vast majority
populations of which the CBOs we spoke with were com- of public health trainees at the undergraduate, graduate,
posed of and/or served (Pratt et al., [35]). and postdoctoral levels (both MD and PhD) are female
The CBO staff and academic researchers who par- [U.S. Department of Education [41]], senior researchers
ticipated in our study expanded the notions of respect, are significantly more likely to be white and male (Khan
beneficence, and justice to encompass the relational et al., [42]; Lauer et al., [43]).
ethics of researcher-community interactions, beyond In the Belmont Report, respect is primarily enacted
the principlist framework most commonly utilized in by allowing individual human subjects the opportunity
human subjects research regulations. Study participants to consent with autonomy and full knowledge about the
emphasized the need to infuse these values throughout project’s potential risks and benefits. The researcher her-
the entire research process, not just when considering self is typically absent from this process—albeit often
the rights of individual human subjects who are eligible named in the consent sheet as the individual control-
for enrollment into a study. This emphasis echoes the ling the research project. These Informed consent sheets
Fielding‑Miller et al. BMC Medical Research Methodology (2022) 22:237 Page 8 of 10

are typically standardized across a research institution, not only their interactions, but also the research ques-
with language provided and approved by an Institutional tions and approach they utilize. Participants emphasized
Review Board (IRB). The researcher’s role is to simply that when conducting research on – or with – commu-
provide this form and allow the potential human subject nities that have been made vulnerable by historic and
to make their decision about participation. Conversely, ongoing injustices, researchers must consider not just
CBO staff and researchers who had extensive experi- the theory underpinning their academic research, but
ence working with CBOs centered the practice of respect the praxis when engaging in the work of data collec-
around the actions and intentions of the researcher. tion. This can manifest in two distinct ways. First, will
Respect was demonstrated, practiced, and earned in the benefits of the research-project-as-work be distrib-
ongoing human relationship between individual mem- uted fairly between the CBO and the researcher? In other
bers of the study team, organizational staff, and the words, will the tangible benefits which the CBO receives
organization’s clients. Participants did express frustration from supporting the research project be comparable to
when research projects expanded beyond the originally those which the researcher will accrue via publications,
agreed upon protocol (analogous in some ways to violat- grants, conference talks, and opportunities for promo-
ing informed consent), but this was secondary to their tion? Second, will the way in which the research is con-
overwhelming frustration with researchers who did not ducted reinforce or dismantle pre-existing systems of
act with humility, work towards cultural competence, and oppression? Is the research structured to demand ‘slave
demonstrate their willingness to be ‘in relationship’ with narratives’—data that reinforces stigmatized understand-
the organization. This approach to ‘respect’ in human ings of communities that have been made vulnerable by
subjects research which centers individual autonomy historical and ongoing experiences of white supremacy,
was essentially anathema to respect as our participants imperialism, and cisgendered heterosexual patriarchy?
described the process, instead they championed the need Or does the researcher take advantage of available CBO
for the researcher to step into a dyadic, and dynamic, expertise to understand what type of evidence would be
process of ongoing mutual discovery. most useful to address root causes of health inequality for
Both CBO and academic research participants repeat- the community of interest?
edly discussed the researcher’s obligation to not sim- Practically, academic researchers function within
ply minimize harm, but to actively consider how they academic research institutions. As such, their abil-
might create benefits for the CBO within the scope of ity to enact many of the suggestions made by study
the research project. While both minimizing harm and participants can be helped or hindered by institu-
maximizing benefit are key aspects of beneficence, the tional flexibility. For example, several CBOs described
pragmatic difficulty of maximizing benefit for individual using volunteer time as a strategy to vet academic
human subjects frequently leads researchers to focus researchers. This is a justifiable strategy on the part
ethical concern on the imperative to minimize harm of the CBOs. However, the practice can also privilege
(non-malfeasance) (Mackenzie et  al., [44]; Beebeejaun researchers with the financial security and free time
et  al., [45]). As many of our participants pointed out, to prioritize community volunteer work (i.e., afflu-
entering into ongoing relationship with CBOs as dis- ent white men who engage in little to no care work).
tinct entities offers researchers the opportunity to move Universities and departments can counter this risk by
beyond non-malfeisance and identify opportunities for providing institutional support for time spent relation-
beneficence, both to the community as a whole and to the ship building, acknowledging that this may not result
CBO as a specific institution. Many participants linked in immediate products. Institutional Review Boards
this idea of beneficence, not simply non-malfeasance, to (IRBs) and other ethical oversight entities can also
the broader notion of justice. To our participants, jus- create spaces to consider the importance of respect-
tice meant acknowledging the expertise that CBO staff ful relationships and tangible benefits to partner
brought to a partnership, that the researcher should act community-based organizations. For example, while
with cultural humility, and actively considering where the study committees for the National Institutes of Health
harms and benefits of the project were accruing. More- (NIH) are asked to comment on ethical concerns in
over, several participants linked the notion of justice in grant proposals, there is no formal function available
academic-CBO partnerships to broader notions of racial, for questioning the potential burden that a project
gender, and class justice. The obligation to enact justice may place on community partners. Nor are review-
in research translated to an obligation to consider social ers asked to weigh the distribution of immediate ben-
justice in broader society. When working with CBOs, the efits that accrue to investigators versus community
researcher has an obligation to consider how their own organizations as a result of the project. Finally, while
position within these power structures might influence IRBs are required to include at least one member who
 Fielding‑Miller et al. BMC Medical Research Methodology (2022) 22:237 Page 9 of 10

represents “the community,” it has not always been Declarations

clear which communities are represented by these IRB
Ethics approval and consent to participate
members or if their ability to advocate for ethical com- This study was reviewed and approved by the Institutional Review Board at
munity or CBO involvement in research is appropri- the University of California, San Diego. All participants provided informed con‑
ate (Klitzman, [46]). Further attention to relationship sent prior to being interviewed. All methods were carried out in accordance
with relevant guidelines and regulations.
building and community engagement by ethical over-
sight entities at universities has the potential to help Consent for publication
bridge the gaps between community interests and aca- Not applicable.

demic research priorities, conferring greater benefits Competing interests

to both researchers and CBOs. The authors declare that they have no competing interests.

Author details
1
 University of California, 9500 Gilman Drive #0507, La Jolla, San Diego, CA
Conclusion 92093, USA. 2 San Diego, USA. 3 Centre On Drug Policy and Evaluation, Vancou‑
ver, Canada.
The heart of successful public health research and
practice is meeting people where they are. Academic Received: 14 March 2022 Accepted: 18 August 2022
researchers often rely heavily on community-based
organizations to facilitate those meetings. While ethical
research guidelines exist for engaging with individual
research subjects, no comparable guidelines exist for References
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