Beyond Belmont: Ethics for Community-Engaged Research

Abstract

Community-engaged research (CER) methods have become increasingly prevalent in qualitative social science research across a number of fields. The origins and purposes of CER inform an approach to research ethics in which close collaboration to co-produce knowledge with community members is central. Yet the system of ethical principles and procedures that has governed most research involving human participants for more than half a century is rooted in a very different ethical paradigm, one that emerged from revelations of abuses in biomedical research and is designed above all to protect participants from harm. We argue that research orientations (and their underlying ethical principles) are grounded in and constrained by the historical and cultural circumstances that produced them. Advancing an ethics of community engagement and collaboration therefore requires expanding the parameters of ethical consideration and confronting the differences between existing conceptions of research ethics and CER’s ethical imperatives. Questions of how best to do so have spurred active debates and innovations among scholars and practitioners. We seek to contribute to this discussion by a) examining the origins and underpinnings of these distinct ethical paradigms; b) specifying key areas of convergence and divergence between them and the resulting ethical tensions and imperatives that confront CER practitioners; and c) articulating concrete strategies and practices that researchers have pursued to advance an ethics of community-engaged research, drawing in part on insights gained through four CER collaborations with local partners in marginalized low-income communities in central California.

Just before resigning from office in the summer of 1974, U.S. President Richard Nixon signed legislation that established, for the first time, a national system of research ethics and review. Its principles and regulations arose as a response to revelations of sweeping abuses in biomedical research in the 1960s and 1970s. Fifty years later, the system remains in place with only limited revisions. Yet the scope of its application has broadened significantly, to a range of fields in the social as well as medical sciences and to most forms of research involving human participants. New and different research methods have emerged in the intervening years, some of which raise distinct ethical questions that lie beyond the scope of the decades-old system of ethical review. Community-engaged research (CER) – broadly defined as research conducted in collaboration and with the active participation of community members to address issues of community concern – is one such research orientation. Often involving partnerships between universities and community organizations, CER methods are increasing in many fields, including in the social sciences.

The ethical imperatives of CER depart from and extend beyond the logic and guidance of the existing system of ethical review in a number of ways (Shore, 2006; Windsor et al., 2024). The debate among community-engaged practitioners regarding how best to navigate these differences includes interventions at the level of ethics and principles, proposals for institutional and regulatory reform, and suggested practices and strategies for researchers. Our aim is to contribute to this dialogue, and particularly the latter discussion. The perspectives and reflections offered here grow out of our experiences – as a historically-oriented political scientist and an applied social psychologist – in conducting community-engaged research with local community partners. We address three central questions: 1) What are the distinct origins and underpinnings of a) the dominant existing system of ethical review for research involving human participants and b) the practice of community-engaged research?; 2) What are the resulting points of convergence and divergence between the ethical paradigms of the existing system and of CER, and how are CER scholars and practitioners negotiating these tensions and contradictions?; 3) What specific strategies and practices have researchers used to respond to the tensions between the two paradigms and to advance ethical CER practices in research projects, at the stages of research design, data collection, and societal impact?

Each of these questions is addressed in turn below. Part One examines the contrasting historical origins of different research orientations, and Part Two demonstrates how these histories inform not only the distinct methods but also the underlying ethical principles and practices of the existing system and of CER. Part Three explores the incongruities between these ethical frameworks and the debate among CER scholars over how to navigate them. Part Four examines lessons and insights drawn from four projects of the Center for Economic Justice and Action, a research center at the University of California, Santa Cruz specializing in community-engaged research with low-income communities on California’s central coast. Part Five summarizes the analysis and core conclusions of the paper.

How We Got Here: A View From History

The origins of contemporary research ethics and review procedures in the United States and elsewhere can be traced to the Doctors’ Trials at Nuremberg in the wake of World War II. Twenty-three Nazi doctors and administrators were tried for abuses in biomedical research experiments conducted on concentration camp prisoners and others. The 1947 trial verdict included a section entitled “Permissible Medical Experiments,” which became known as the Nuremberg Code. It set out ethical principles for research with human participants, including the principle that their participation must be voluntary and that they must be protected from physical or mental harm (Baker, 2024; Washington State Courts, 2008). The Nuremberg Code was followed by the Declaration of Helsinki, adopted by the World Medical Association in 1964. Its central principles focused on the design and conduct of experimental procedures, the qualifications and supervision of researchers, the safeguarding of research subjects, and the potential risks and benefits to research subjects or others (World Medical Association, 1964). Many countries subsequently developed their own codes, using the Helsinki principles as a framework. In the years that followed, the application of ethical codes expanded in many countries and institutional settings to cover virtually all research with human participants, including in the social sciences (Guillemin & Gillam, 2004).

In the United States, medical research expanded dramatically during and after World War II, driven by unprecedented levels of federal funding and coordination. Researchers initially rejected the need for external ethical standards or regulatory supervision, concluding that Nazi atrocities were unrelated to their own work (Vanderpool, 1996). By the mid-1960s, the need for a more rigorous review system grew clearer, particularly after a 1966 article by Harry Beecher detailing 22 instances of “unethical or questionably ethical studies” that had been conducted (and reported in medical journals) over the previous two decades. The initial governmental response was piecemeal: internal guidelines were adopted by the Food and Drug Administration (in 1966), U.S. Public Health Service (in 1966), and the National Institutes of Health (in 1971), and regulations were introduced by the Department of Health, Education and Welfare (in 1974) (Beecher, 1966; Institute of Medicine, 2001; Vanderpool, 1996).

The catalyst for a unified system of ethical review in the United States came a decade after Helsinki. Media reports of unethical practices in a long-running research study in Tuskegee, Alabama shocked the U.S. public and lawmakers in 1972. Conducted by the U.S. Public Health Service between 1932 and 1972, the study examined the impact of untreated syphilis on approximately 400 black men who were misled about their condition and deprived of available treatment. As disturbing as the revelations of misconduct was the fact that the abuses had repeatedly been brought to the attention of public health officials by a Health Service employee, yet no one had acted to stop them (Baker, 2024; Elliott, 2017; Rothstein & Wolf, 2024; U.S. Centers for Disease Control and Prevention). Congressional hearings in 1972 exposed not only the Tuskegee abuses but others as well, including studies in which institutionalized children with intellectual disabilities were intentionally exposed to hepatitis, and cancer patients were subjected to whole-body radiation to determine the levels a soldier could survive in a nuclear incident (Elliott, 2024). These revelations prompted Congress to establish a formal system of external oversight and regulation. They also informed the driving purposes of that system: to shield research participants from harm. In particular, lawmakers wanted to stop vulnerable people “from being exploited by a medical establishment that viewed them as useful ‘research material’” (Elliott, 2024, 3).

Initial attempts to legislate a strong central regulatory board failed in the face of stiff opposition from medical professionals. Lawmakers subsequently crafted – and the President signed – the National Research Act (NRA), which established a National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research (Elliott, 2024; Rothstein & Wolf, 2024; Vanderpool, 1996). Named the “Belmont Commission” for the Maryland conference center where it met, the 11-member body laid the foundations of the current system of research ethics guidance, review and regulation. Congress’s charge to the commission was to identify “the basic ethical principles” and guidelines for conducting human subjects research, the mechanisms to assure informed consent in research involving vulnerable populations, and appropriate protections in research not already regulated by the U.S. Department of Health, Education and Welfare (now U.S. Department of Health and Human Services; Public Law 93-348, Title II).

Drawing on guidance from a team of physicians, lawyers, researchers, ethicists and other experts, the commission’s landmark report identified three principles as “particularly relevant to the ethics of research involving human subjects”: 1) respect for persons – understood as the moral requirement to respect the autonomy of individuals and to safeguard those with reduced autonomy (and applied in part through procedures of informed and voluntary consent and confidentiality); 2) beneficence – understood as the obligation to “do no harm” and to minimize negative impacts and maximize benefits in conducting research; and 3) justice – understood as the need for fair and equitable distribution of the “burdens and benefits” of research, including the protection of vulnerable populations (The Belmont Report, U.S. Department of Health and Human Services).

The NRA required institutions seeking federal support for human subjects research to have in place an Institutional Review Board (IRB) to approve research proposals based on these principles (Public Law 93-348, Title II, Section 219). Although many institutions already had their own review bodies, the new law led to the standardization and wide-scale adoption of IRBs and charged the HEW secretary with creating regulations to govern the conduct of IRB reviews (Rothstein & Wolf, 2024). Revised over time, the unified regulations – known as the Common Rule – were incorporated by over a dozen federal agencies. Though compliance was legally required only for research funded by the federal government, many institutions opted to require IRB review and conformity with the Common Rule for all human subjects research (Rothstein & Wolf, 2024). By 2023, there were more than 2,300 IRBs operating in the United States, mainly in university or health care institutions (U.S Government Accountability Office 2023).

Ethics in Community-Engaged Research

How is this history relevant to a discussion of the ethics of community-engaged research today? Because research methods – and the ethical principles that govern them – are invariably grounded in the historical and cultural circumstances that produced them, we argue that the search for a more robust ethical CER must be informed by an understanding of how its motivations and purposes are distinct from those that animate the existing ethical system. The Belmont Report was shaped not only by the fact that 1) the research prompting the inquiry and at the center of its attention was biomedical in character, but also by particular (and historically specific) understandings of 2) who research participants were and their roles in the research process; 3) what respecting their rights and autonomy entailed; 4) where knowledge and expertise resided in the research process; and 5) how and to what purposes knowledge generated in research would be put to use.

The system of ethical review that emerged pre-supposed familiar hierarchies of knowledge and expertise in the research process. In this context, it read “ethics” above all as requiring protection of human participants in research processes that were often presumed to be beyond their capacity to comprehend, engage in, or use for purposes they defined. As a report by the American Association of University Professors (AAUP) observed, “The government’s system for regulating research involving human subjects was born out of fear that researchers might, whether wittingly or not, physically or mentally injure the human beings that they study.” It therefore was designed “to limit professional choice” in order to protect human subjects (AAUP 2001, 1).

These concerns were well-taken, in light of the history of abuses that informed the report. Its findings were in many ways groundbreaking and its impact has been profound, providing essential guidance for ethical research across multiple fields. Yet it produced a system that was unavoidably historically, culturally, and methodologically specific – even as research methods subject to its oversight have evolved and expanded in fundamentally new directions. The consequences have been particularly significant in some research arenas, including for emerging forms of research in the social sciences with distinct orientations, such as CER.

The historical roots of community-based research – and its cultural, political and conceptual underpinnings – are far removed from the medical research of the 1940s to 1970s that informed the Belmont principles. In the United States, its origins are often traced to the work of social psychologist Kurt Lewin and his approach to “action research” – a cycle of inquiry, action, and reflection to address urgent social problems, carried out in collaboration with or by those most affected (Fine, 2008; Lewin, 1946; Macaulay, 2017). The broader tradition of Participatory Action Research (PAR) emerged from disparate and distinct roots in Latin America, Africa and India in the 1960s and 1970s. From its inception, it was shaped by its roots in wrenching experiences of decolonization and post-colonial state-building, which generated intense struggles against poverty and oppression produced by longstanding racial, ethnic, gender, and class hierarchies. The goals and principles of social change and social justice were thus foundational to the community-engaged research approaches that emerged from these origins (Kindon et al., 2007).

Likewise, the methods and purposes of CER were fundamentally distinct from those of traditional biomedical research. Though their methods varied, CER practitioners shared the orientation that knowledge, expertise, and insight were not the preserve of specialists, but were widely held among members of the communities they studied (Fine, 2008; Kindon et al., 2007). CER scholars believed not only that more research at the community level was important to social science inquiry, but that directly engaging the community in the research process (whether through interviews, focus groups, surveys, storytelling, or other strategies) was in many ways critical to developing a more accurate and deeper understanding of the structures and forces that shaped peoples’ lives and capacities to change their circumstances. The use of CER methods expanded during the 1980s, particularly in disciplines such as environmental studies, sociology, and psychology; and since the late-1990s, increased attention and financial support has spurred widespread use of community-based participatory research practices in fields such as public health (Fine, 2008; Kindon et al., 2007; Minkler, 2005).

Practitioners pursue community-engaged research for reasons both pragmatic and principled. The practical advantages of community engagement include its capacity to enhance the accuracy, depth, and relevance of research in and about communities, particularly those that are marginalized and under-resourced (Flicker et al., 2007; Mikesell et al., 2013; O’Sullivan et al., 2023; Shore et al., 2011). Researchers have found that the direct engagement of community members can transform research projects in various ways. Community members can help initiate or design research projects in ways that increase a project’s effectiveness, by focusing the attention of researchers on important (and often overlooked) issues in the community. They can inform and improve the design of surveys, focus group questions, and other research instruments by ensuring that questions are posed in terms that are understandable, culturally relevant, and likely to prompt robust responses. The involvement of community members and partners in data collection can boost recruitment levels and response rates in research studies, both by increasing overall numbers and by incorporating parts of the community that are more difficult to reach. At the data analysis stage, high levels of community involvement and collaboration with research partners rooted in the community can reveal findings and insights that might otherwise go unnoticed. Community engagement can also increase the likelihood of effective and appropriate social impact and outcomes from the research (Cordner et al., 2012; Minkler, 2005).

Many practitioners have also come to adopt CER methods because of the core principles that inform this approach. CER challenges dominant ideas about what counts as knowledge, who possesses it and how research practices can best advance its development; it also questions the notion that the sole or overriding purpose of research should be to contribute to the stock of knowledge, rather than to serve community needs or effect change (Gordon da Cruz, 2018; Kindon et al., 2007; Manzo & Brightbill, 2007). It is a research orientation, Michelle Fine writes, that “embodies a democratic commitment to break the monopoly on who holds knowledge and for whom social research should be undertaken” (Fine, 2008, 215). The principle that those most affected by the research should be integrally involved in designing and conducting projects is fundamental for practitioners who share the conviction that “[t]here should be no research on us without us” (Fine & Torre, 2019, 435). Similarly, community-engaged researchers emphasize the need to account for the power relations between academic researchers and community members, in order to ensure that the research does not “reproduce the very inequalities they seek to challenge” (Kindon et al., 2007, 2; London et al., 2022).

Confronting and Navigating Ethical Differences

CER, in short, has very different aims and methods than much of the traditional research that informed the Belmont principles, due in part to the research context and historical moment that produced it. The contrasts between the dominant approach to research ethics reflected in the Belmont Report and the CER approach can be observed along five dimensions. The context that produced the Belmont principles was one focused on a) clinical and experimental research designs and methods appropriate to biomedical inquiry; in which b) researchers developed and controlled the research project from inception to conclusion. Accordingly, the ethical guidance provided addressed c) individuals who were the subjects of the research study; and its purpose was d) protective, to shield human research subjects from harm or undue risk. Operationally, the guidance rested on e) principles or procedural ethics: researchers were expected to apply the Belmont Report’s broad moral principles to the particularities of their projects.

The purposes and methods of CER vary along every dimension. CER projects are generally a) participatory in design, rather than clinical or experimental, and b) the research is developed and conducted collaboratively, often alongside community partners. The focus of the research is c) on communities, rather than individuals; and the overall aim of ethical CER is not only to protect individual research participants but d) to give them voice and agency in the research process. At the operational level, CER practitioners rely less on procedural ethics and more on e) “everyday ethics” or “ethical practices” in the conduct of the research from start to finish (Guillemin & Gillam, 2004; Shore, 2006).

The contrast reflects two manifestly different ethical paradigms – one emphasizing protection of human participants who may be at risk of harm, and the other emphasizing engagement and collaboration with participants who possess knowledge and insight critical to the research (Reid & Brief, 2009). The ethical significance of the distinction emerges in their competing conceptions of each of the main principles embodied in the Belmont code (Shore, 2006; Windsor et al., 2024).

The Belmont principle of respect for persons addresses the autonomy of research participants. The emphasis is on the rights of the individual participant (e.g., to take part in or withdraw from the research, to personal safety during its conduct). (Banks et al., 2013; Flicker et al., 2007). Community-engaged research focuses attention more broadly on the self-determination and interests of the larger groups or communities that motivate the research (Banks et al., 2013). This requires a dual shift in ethical perspective: to direct attention beyond the pool of study participants to include the larger groups and populations that are the focus of the research; and in doing so, to extend the level of analysis beyond the individual – resisting, as Bosk puts it, the notion “that the individual is the proper measure of all things ethical” (Banks et al., 2013; Blee & Currier, 2011; Bosk, 1999; Mikesell et al., 2013). Because CER researchers understand communities as “more than a grouping of individuals” (Flicker et al., 2007, 481), they ask what the rights and well-being of the community entail, and what a robust notion of community autonomy or self-determination might mean, among other questions (Banks et al., 2013; Mikesell et al., 2013; Shore, 2006).

Likewise, the Belmont principle of beneficence rests on the twin concepts of a) maximizing benefits and minimizing negative impacts produced by the research, and b) doing no harm. In practice, however, the protective orientation of the Belmont system often translates into a one-sided approach to this principle in reviews of social science research. “[M]ost social science review boards interpret beneficence exclusively as an imperative to ‘do no harm,” write Manzo & Brightbill. “The idea of ‘maximizing beneficial outcomes’ is often bypassed” (Manzo & Brightbill, 2007, 35). For community-engaged researchers, whose projects are often explicitly designed to generate a positive social impact, this lack of attention to the “doing good” side of the research equation is consequential. It leaves unaddressed some of the most important questions about project design and resource allocation (Shore, 2006). The traditional focus on individual-level impacts further compounds the problem. The “benefits” to be maximized through CER are often directed more broadly: community-engaged researchers see themselves as ethically obligated to consider risks and harms to the community as a whole, rather than solely to the individuals involved in the project. Yet IRBs frequently do not focus on such community harms or benefits in weighing research proposals. (Cordner et al., 2012; O’Sullivan et al., 2023; Reid & Brief, 2009).

The third principle, justice, is also generally defined in terms that constrain its application to CER. The emphasis in the Belmont Report is on distributive justice, and whether the burdens and benefits of the research are equitably shared (Guillemin & Gillam, 2004; Shore, 2006). The concern that some vulnerable individuals and groups (such as prisoners) not be coerced into serving as research subjects – and that other groups (such as women) not be excluded from the potential benefits of research – is widely shared (Flicker et al., 2007). However, CER’s commitment to a rich conception of social justice – in which a core purpose of many research projects entails challenging unjust social and community structures – is not captured in this framework, nor considered by most IRBs as they assess research proposals. On balance, the conception of justice in the Belmont Report and applied by many IRBs remains “relatively silent on larger social justice issues” that are at the center of much community-engaged research (Shore, 2006, 7).

A growing scholarly literature is confronting the implications of the gap between the Belmont framework and the ethical imperatives of social science research methods involving human participants, including CER. Social scientists have long noted the disciplinary differences between much social science research and the medical research that informed the Belmont code. Even during the Belmont Commission’s proceedings, there was recognition by commission staff that much research in the social and behavioral sciences poses fundamentally different (and often lower) risks to research participants (Tropp, 1979). A 2001 AAUP report investigating the impact of ethical reviews on social science research states as its “central conclusion” that IRBs “mistakenly apply standards of clinical and biomedical research to social science research, to the detriment of the latter.” After consulting with researchers in anthropology, political science, history and sociology, AAUP noted that IRBs have become a “permanent feature of research institutions in the U.S.,” and “their influence is expanding,” yet they frequently do not assess social science research adequately or appropriately (AAUP 2001, 2).

In the U.S. context, some critics point to specific limitations in federal regulations. One survey of research ethics boards in 22 countries (including IRBs in the United States) showed that 21 countries either permit or (less commonly) require their review boards to consider both societal and long-term implications of the proposed research. The U.S. is the exception: IRBs in the United States are charged with considering the impacts on study participants, rather than on broader groups or the larger society, including over time; and the Common Rule explicitly prohibits IRBs from considering “possible long-range effects of applying knowledge gained in the research (for example, the possible effects of the research on public policy)” as they weigh research risks and benefits (Common Rule, HHS; Rothstein et al., 2024). For many CER projects, these larger and longer-term implications are a core part of the research mission, and weighing them in considering how to allocate resources and conduct the necessary research is a central ethical issue.

These and other concerns have sparked wide-ranging discussions of ethical CER practices that are both international and inter-disciplinary. Although national ethics codes vary by country, they generally reflect common underlying principles expressed in foundational ethics guidelines such as the Nuremberg Code, the Helsinki Declaration, and the Belmont Report (Flicker et al., 2007; Guillemin & Gillam, 2004). Discussions among CER scholars are unfolding both at the level of theory and principle and at the level of practice and procedure. Much of the focus for CER practitioners is on two core challenges in the conduct of CER projects: a) how best to meet existing IRB expectations and practices derived from the Belmont principles (or similar ethical codes), given CER’s distinctive orientation, and b) how best to embody and advance the ethical imperatives of CER that conflict with or reach beyond the scope of the Belmont system.

The response to these challenges has taken various forms. Some scholars have engaged these questions at a theoretical level, calling for alternative conceptions of ethics and ethical review (e.g., Banks et al., 2013; Blee & Currier, 2011; Mikesell et al., 2013; van Zyl & Sabiescu, 2020). Others have proposed reforms to the IRB review process that would better accommodate CER, such as incorporating a phased approach to IRB submissions (Kindon et al., 2007; Windsor et al., 2024) and adopting community-led ethics review processes (Cargill et al., 2025; Eder, 2023; O’Sullivan et al., 2023). Researchers have also focused on practices that can be adopted at the ground level, in and through the research process itself, to better meet these challenges. This is reflected in calls for “situational,” “everyday,” “reflexive,” or “relational” ethics (Banks et al., 2013; Blee & Currier, 2011; Cordner et al., 2012; Kindon et al., 2007; van Zyl & Sabiescu, 2020). It is the latter discussion to which we turn next, through an examination of four community-engaged research collaborations carried out by a university research center which, like many others, is simultaneously subject to Belmont-based IRB requirements and rooted in the ethical imperatives of CER.

From Principles to Practices

As a university-based research center, the Center for Economic Justice and Action (CEJA) (formerly the UCSC Blum Center on Poverty, Social Enterprise, and Participatory Governance) conducts community-engaged projects with marginalized low-income communities on California’s central coast. CEJA’s mission is to address economic inequality and advance economic justice through projects that bring together local community partners, faculty, and students. Virtually all of its projects are initiated by community partner organizations that seek CEJA’s research experience and collaboration. Student researchers assist with all aspects of the research process, from design to data collection and interpretation. CEJA’s work takes researchers into extremely low-income communities facing housing, food, health, and income insecurities (Bertram & Bullock, 2023). Many of these communities include hard-to-reach populations living on the margins of local labor markets, social service systems, and healthcare systems. Some have faced histories of discrimination and exclusion; others are distrustful of or unfamiliar with existing services and structures. This can make CEJA’s research projects both more challenging and more valuable, as data is gathered in communities that are often excluded from surveys, polls, and local outreach efforts.

CEJA grounds each project in the broad principles and practices of CER, and in the particular local and cultural context of the relevant community (O’Sullivan et al., 2023). This entails not only a commitment to close and equitable collaboration with community partner organizations, but also respect for the collective experience and history of a given community. Partners play an essential role in contextualizing the collaborative research, in part by educating CEJA’s research teams about the experiences of the communities at the heart of each project. These have included farmworkers whose livelihoods depend on seasonal work; survivors of intimate partner violence; individuals and families who have experienced homelessness; day laborers whose work arrangements and conditions are highly precarious; undocumented families; members of the Latinx community who are indigenous language speakers; and people in the justice system.

This discussion draws on four recent collaborative projects with different community partners and distinct purposes. The four projects’ goals were: 1) to investigate the impact of a pilot guaranteed income and financial training project for low-income families headed by women (with Ventures and Monarch Services as partners); 2) to develop a manual that documents the operations and outcomes of a transitional employment and training program for unhoused individuals (with the Homeless Garden Project); 3) to explore the effects of stable and affordable housing on low-income families’ long-term economic security, well-being, and civic engagement (with Habitat for Humanity Monterey Bay); and 4) to collaborate on a series of needs assessments of low-income communities (with the Community Action Board of Santa Cruz County).

We have identified three ethical “pivot points” in CEJA’s community-based work – points at which choices are made (large and small) that advance or undermine the ethics and effectiveness of collaborative research. In various ways, each pivot point presents opportunities and obstacles reflecting the twin challenges of complying with existing IRB/Belmont practices while advancing broader CER ethical principles.

Research Design

The first pivot point appears at the earliest stage in a research project – in defining the central research question(s) and design, including the methods and instruments that will be used. CER encompasses a broad spectrum of approaches to research design and community involvement. At one end of the spectrum, research is conducted in and with specific communities by researchers seeking to answer questions they have identified; at the other end, community groups themselves pose the questions and shape the methods used to answer them, enlisting the support of university researchers (Banks et al., 2013; O’Sullivan et al., 2023). CEJA’s work falls on the latter end of the spectrum. The core strategy is to build and sustain close relationships with community partner organizations that have deep roots in the community, and build research collaborations on this foundation. CEJA’s partners have demonstrated records of trust and respect in their communities, and active leadership on the specific issues (e.g., housing or food insecurity) that are at the core of the projects.

The research design process begins when community partners contact CEJA seeking evidence-based answers to questions that arise from community needs and conditions. Projects start with a conversation about what these partners want to learn and why. Their purposes and priorities define the project’s parameters, by determining what new knowledge the research seeks to produce and how it will serve the needs of the community. CEJA researchers bring expertise to bear to help determine the best strategies to meet these aims. The team reviews with partners advantages and limitations of various research strategies, such as focus groups, interviews, surveys, and analysis of government data. These initial conversations include candid and direct discussions about what can (and cannot) be expected in terms of research outcomes and impacts. Defining realistic expectations – and not overpromising – is both a practical and an ethical imperative (O’Sullivan et al., 2023).

In the design stage, tension can arise between the obligation to meet IRB timelines and requirements, and CER’s ethical commitment to collaborative engagement. For example, IRBs generally request that all relevant materials (e.g., information about participants, research questions, recruitment flyers, survey instruments) be developed and submitted for approval before the project begins, to assess whether human participants will be adequately protected from harm during the research. Yet the collaborative and developmental nature of CER projects mean that key elements of the research design – including relevant materials such as questionnaires or interview protocols – emerge and evolve over time, and are co-produced in an iterative process with community participants (Manzo & Brightbill, 2007; O’Sullivan et al., 2023).

Developing the interview protocol and schedule for CEJA’s guaranteed income study was a case in point: this was a multi-step process, with adjustments continuing well past the design phase. After working with the project’s community partners to identify questions to pose to study participants, CEJA researchers drafted the interview protocol, shared and discussed it with project partners, translated it into Spanish, and pilot-tested it with the student research team. Because the project sought to assess often subtle issues about how extremely low-income families manage and think about money – and how this can change when provided a monthly cash stipend to supplement their income – several adjustments were required, frequently in consultation with project partners. For example, when it became clear from initial interviews that respondents did not understand specific scale questions as intended, CEJA worked through the options of providing context to clarify the relevant questions, re-framing them, or eliminating them. The interview protocol evolved as these adjustments were made. CEJA’s approach to IRB requirements in such cases has been to consult with local IRB staff in managing modifications. Similar to other community-engaged researchers, CEJA frequently needs to submit amendments and revisions to IRB protocols as a result (Cordner et al., 2012).

Other crucial ethical issues in designing CER projects fall outside the standard purview of institutional review bodies. In CEJA’s guaranteed income study, project partners and CEJA wanted to ensure that participants’ monthly stipends would not be counted as “income” in determining eligibility for means-tested state assistance programs (e.g., Temporary Assistance for Needy Families, Supplemental Nutritional Assistance Program), potentially reducing access to those resources. This required providing state agencies with documentation (e.g., an evaluation plan and IRB approval) to exempt the stipend payments from income calculations. Although this complicated and slowed project planning, the ethical implications from a CER perspective were clear: CEJA and its partners needed to “minimize potential harm” to the families in the study while also “maximizing potential benefits” for low-income recipients of future guaranteed income programs by establishing the principle that such stipends should supplement (rather than supplant) existing forms of assistance. The issue was settled and the project continued as envisioned, but the experience highlighted the ethical imperatives not only of ensuring that research participants are fully informed of the possible implications of their involvement (see Banatar et al., 2025 for example), but also that decisions about the research process reflect social justice principles regarding the larger community.

Data Collection

The second pivot point arises in the process of data collection. Here too the community setting and participatory character of CER pose distinct ethical imperatives. The primary challenge CEJA has encountered at this stage involves decisions about how and where to commit time and other resources. These are often not simply administrative or financial questions, but ethical ones. CEJA has relied on a few specific strategies at this stage, including two-way capacity building, making the data collection process legible to community participants, and maintaining the flexibility needed for genuine collaboration with community partners and participants.

Two-way capacity building entails strengthening the research capacity of community partners while also building the ethical engagement capacity of CEJA’s university-based research teams (Mikesell et al., 2013). The view that building community-based capacity, expertise and resources is vital in community-engaged research projects is widely held among CER practitioners, including CEJA. Ethical concerns are raised when research is conducted by teams of professional researchers who “parachute” or “helicopter” into a community, run surveys, conduct interviews or other investigations, then exit – “extracting” the desired data, but leaving little or nothing behind. CER practitioners therefore argue, on ethical grounds, for practices such as sharing research findings with communities, integrally involving community members in interpreting and productively employing the data for community purposes, and developing research-related skills and capacities among community partners or within the larger community (Cordner et al., 2012; Flicker et al., 2007; O’Sullivan et al., 2023; Peterson et al., 2025).

Although the type of capacity building is determined by the project and the expressed needs and resources of partner organizations, CEJA’s consistent aim is not only to deepen its community partners’ participation in collaborations, but also to build institutional knowledge and skills among partners’ staff or leadership whenever possible. CEJA frequently works alongside community partners in developing and conducting surveys and focus groups, for example. At times, capacity-building has involved specific and intensive skills-building efforts. For example, in 2021, CEJA worked with the Community Action Board of Santa Cruz County (CAB) to strengthen their in-house capacity to analyze their community surveys. CAB conducts biennial needs assessments of the low-income community the agency serves, and had gathered over 200 responses to their 2021 survey. CEJA faculty (one of whom served on CAB’s board) worked with CAB’s project leaders to identify initial codes for survey responses to open-ended questions about the social and economic needs and sources of resilience within the community. CEJA provided guidance and oversight as a cohort of CAB staff prepared to devote a weekend to coding and interpreting their data. The process was designed to deepen staff understanding of the responses CAB had received from community members. Each response was read and coded by two CAB staff; they sought a third opinion if the two did not agree. The experience not only demystified the process of coding and data analysis, but also allowed staff members to step back and reflect together on the larger narrative the data conveyed about conditions in the community.

In addition to building community partners’ research capacities, CEJA simultaneously builds its own teams’ capacity for ethical community engagement. Research teams are typically composed of both graduate and undergraduate students whose interests and lived experiences align with the research projects and communities with which they are working. Many student researchers are students of color and/or come from low-income families; they bring both language skills and interpretative and communicative capacities that are invaluable to CEJA’s work with marginalized communities. Students are first introduced to the Belmont principles and ethical practices through an IRB-required online training program produced by the Collaborative Institutional Training Initiative (CITI). CEJA’s internal training program then enables students to reflect on the broader ethical principles of community-engaged research, including respect for community knowledge and the social justice aims of CEJA’s partners (Fassinger & Morrow, 2013). As the project unfolds, students learn practical aspects of coding and thematic analysis, interviewing techniques, and empathetic listening. CEJA also arranges meetings with its partner organizations and student researchers at various stages in the research process. The context that its partners provide about the historical and current conditions facing participants and their communities is a vital part of the students’ training in community-engaged ethics. Equally important, these interactions build trust on both sides of the partnership.

A second CEJA strategy is to commit time and resources to the multilayered translation process that is needed to make data collection “legible” to community members. This extends well beyond language translation, though Spanish translation is necessary for the majority of its projects. In the communities in which CEJA works, another type of translation is equally important from an ethical standpoint: “translating” the research process into one that makes sense from participants’ perspectives (van Zyl & Sabiescu, 2020). For example, although it is standard research practice (consistent with Belmont guidance) to explain principles such as “informed consent” and confidentiality procedures in enlisting project participants, the ethical obligations run far deeper in many CER projects. It is often necessary to take time to carefully narrate and explain specific aspects of the research process and its larger purposes. Though quickly grasped once explained, little if anything about the data collection process (including how data will be aggregated, anonymized, and analyzed) is self-evident or transparent. The level of explanation needed may demand additional time and attention – but from a CER perspective, taking this step serves both the ethics and the quality of the research by encouraging fuller, more informed and more meaningful participation. The CER objective in such cases is not simply to “inform” community members so they can “consent” to serve as “research subjects,” as Kindon et al. point out. It is instead to enable them to be fully active and invested in the research and its outcomes (Kindon et al., 2007). For example, CEJA has found that when participants understand how the information that they share about their lives and experiences will be combined with the ideas and insights of other community members – and then used to draw larger conclusions about community needs or conditions and to inform collective action – they often become more engaged, more forthcoming, and more deeply invested in the project. In CEJA projects on housing and income insecurity, for example, participants have often been eager to share information and ideas once they see that doing so might help others in their community facing similar circumstances.

Conversations with participants about research processes and goals occur both prior to and during data collection (e.g., interviews or focus groups). CEJA has also found that sharing preliminary findings with community members midway through a project can make both the research process and its significance more transparent to participants and other community members. In a project on the transformative effects of affordable and secure housing, for example, CEJA presented data – including interim findings about key areas of impact, illustrative quotes from interviews, and preliminary recommendations – to a group of participants at a small event in a neighborhood park. In another case, CEJA helped compile a presentation of preliminary data for a “community town hall” held by a partner organization, which included community members who had completed questionnaires. Community members were able to preview the data gathered to date, presented in charts and graphs, along with (anonymous) quotes and stories illustrating major themes. These mid-process interactions give researchers an opportunity to gauge how findings will be perceived, and participants a chance to see the kinds of results the research process will generate, and perhaps provide feedback.

Even with a well-trained and committed team, CER data collection requires a third CEJA strategy – an ethical commitment to flexibility and persistence. We are referring not simply to the type of flexibility that is needed in any field research project, but to the extra time or staff resources and occasional shifts in strategy and process that are needed to achieve more equitable and effective community-based participation and input, especially with hard-to-reach populations. Toward this end, CEJA has frequently worked alongside community partners to expand recruitment efforts (using multiple outreach modalities) or to extend project timelines to incorporate hard-to-reach segments of the population.

Sometimes carefully-laid CER data collection plans are disrupted. In the previously discussed guaranteed income pilot program, CEJA’s team developed a calendar of regular interviews for study participants in a longitudinal project spanning 12 to 18 months. The team soon learned that participants’ schedules were not only extremely busy but highly unpredictable, requiring multiple rescheduling attempts. They then learned that despite initial arrangements for internet access, Zoom was challenging for participants – but that phone interviews worked well. Likewise, CEJA discovered that many participants were unable to block and schedule 30-60 minutes of private time for an interview – but could happily be interviewed while they were cooking dinner, tending their children, or engaging in other daily activities. Each of these shifts in data collection strategies took time and flexibility, but were crucial to effectively incorporating voices that were important to the study.

At other times, CEJA needed to improvise or devise new strategies. The community needs assessments conducted with the Community Action Board illustrate the point. In 2017, CAB was committed to contacting some of the most hard-to-reach community members for input on their biannual needs assessment of poverty and economic hardship in the county. Although the research plan included a survey and eleven focus groups targeting particular subgroups, CAB also wanted to reach those in the low-income community who were unlikely to attend scheduled focus groups or community meetings, despite outreach efforts. They opted to take the assessment directly to these pockets of the community, rather than try to persuade them to come to the focus groups. The result was a series of nine “community pop-up” sessions designed to gather data in particular locations, such as food distribution sites for farmworker families, school events, and soup kitchens. It was a creative approach that ultimately yielded new and richer information – but it posed immediate challenges for CEJA’s research team, which was prepared for focus groups with formal informed consent procedures and now needed to devise a process for this new mode of data collection. Among other obstacles, IRB restrictions on conducting research with certain vulnerable groups (e.g., youth under 18 years of age, incarcerated people) meant that CEJA needed to ensure that the focus group with youth in the Deferred Action for Childhood Arrivals (DACA) program did not include anyone under 18, and that CAB had adequate resources to conduct its focus group with incarcerated individuals without the support of CEJA’s student researchers. The team’s creative solutions helped make it possible for CAB to engage more than 400 community members in the assessment process that year, and to ensure that many individuals who were often excluded from community surveys were an active part of the conversation.

Societal Impact

The third pivot point emerges at the post-research stage, when findings are transformed into research products and leveraged for social impact. In community-engaged research, impact is central to the research mission. It is also the core motivation of most community partners. Yet this stage presents its own ethical challenges. Some may arise over how best to share the findings and with whom, and therefore what form the research products should take. Others emerge in the numerous decisions required in the process of telling the story, reporting the data and presenting conclusions. And still others focus on how to deepen or expand the reach of the project’s community and societal impact. CEJA has relied on two primary strategies here.

One strategy is to discern and follow community partners’ judgements regarding the appropriate forms research products should take. In most cases, research findings are disseminated publicly, through written reports and/or public forums led by community partners. Additional research products from CEJA collaborations have been tailored to the needs of partners and the community, ranging from “information dashboards” for a partner to use on their website, to a user-friendly book-length manual for an organization explaining its programmatic model, to a co-produced “food insecurity index” designed to track unmet nutritional needs in the county over time, which was later replicated with a different community partner in a neighboring county (Amaral, et al. 2022a; 2022b). CEJA’s CER research has also been collaboratively published with community partners in peer-reviewed academic publications (Bullock et al., 2020).

Accommodating both community partners’ goals and IRB requirements can present complications in compiling and reporting findings. In some cases, the challenge is to tell the story revealed by the data while meeting ethical obligations of confidentiality and privacy. Similar to other CER practitioners, CEJA has at times needed to exclude details that might risk identifying participants, even at the cost of a fuller and richer presentation of the findings (O’Sullivan et al., 2023). At other times, the research team has needed to explain to community partners why identifying data about study participants cannot be shared, even when this information would be useful and is being requested for understandable reasons, such as pursuing outreach, advocacy, and social change goals. CEJA researchers have likewise needed to clarify why videos or other materials that would reveal participants’ identities cannot be part of the study. Overall, CEJA has erred on the side of protecting participants’ identities and sought effective strategies to use anonymized data to pursue project goals. CEJA has also worked closely with local IRB administrators to explore options that can best meet community partners’ goals while satisfying IRB requirements.

Perhaps the most important strategy for maximizing the social and community impact of the research has been to build long-term relationships with community partners. If “parachute research” is one of the least ethical ways to conduct community-based research, then these long-term collaborations have reflected the fullest expression, for CEJA, of the ethical commitment to “do good.” A number of CEJA’s projects have been possible only because of longstanding community partnerships; the impact of many others has been expanded in specific ways by these relationships. A few examples illustrate the point.

CEJA’s work with the Homeless Garden Project over fifteen years to evaluate the impact of their twelve-month transitional employment and training program for unhoused individuals has given CEJA a fine-grained understanding of HGP’s model and its transformative effect on the program’s participants. As a result, when HGP was approached by an out-of-state organization interested in launching a similar program, CEJA and HGP shared the history and trust needed to collaborate on this initiative. The project analyzed, documented, and traced the links between each of the core components of HGP’s program (through extensive site visits and interviews). It then produced a step-by-step guide to how others might re-create HGP’s locally-developed best practices in different localities (Homeless Garden Project and Center for Economic Justice and Action, 2025). The result of this collaborative research is a product that not only describes HGP’s work, but significantly increases the societal impact of HGP’s innovative model by making possible replication elsewhere.

CEJA’s work with the Community Action Board over nearly a decade is another example. As described earlier, CEJA has assisted CAB since 2017 with a series of biennial needs assessments in the low-income community CAB serves. This enabled CAB and CEJA to develop and implement a strategy to generate a baseline understanding of conditions in the community and then to explore unanswered questions through successive surveys, with new survey questions and methods building on prior findings. For example, after repeated assessments revealed several consistent top sources of need in the community (i.e., inadequate wages/income, food insecurity, housing precarity, and health challenges), CEJA worked with CAB in 2023 to develop a questionnaire that took the inquiry deeper. Rather than simply ask what respondents’ main concerns or needs were in the previous year, as CAB had done in the past, CEJA helped CAB craft questions probing why these needs arose. The result was a more in-depth picture that enabled the organization to identify where additional services and advocacy were most needed. For instance, respondents citing “health challenges” identified “COVID-related issues” and “mental health” as the top two health problems. Respondents who reported “challenges accessing government assistance” cited “lack of information” and “immigration status” as their primary concerns. These findings positioned CAB to understand and respond strategically – for example, through increased outreach about available services and policy developments (such as the extensions of public health insurance for low-income California residents regardless of immigration status). In a subsequent survey, CAB posed further questions, again prompted by previous findings. Struck by how little many community members were surviving on (half of survey respondents reported annual household incomes of under $20,000 and one-fifth had incomes of $5,000 or less), CAB wondered how they were making ends meet and what this meant for families and the community: Were they working multiple jobs? Were they only able to find seasonal employment? Were they unable to access assistance? Were they going into debt? For the next survey, CEJA faculty worked with CAB on ways to explore these issues. These iterative collaborations deepened societal impact by enabling both more precise data collection and a more informed community response to existing needs.

Long-term community partnerships can also create opportunities for more targeted and impactful capacity building. In a series of generative conversations with several longstanding community partners in 2024, CEJA inquired about the challenges they faced in meeting core community needs due to a lack of time or resources to conduct the necessary research or program development. To help address these gaps in organizational capacity, CEJA secured a grant from a local community foundation and used it to recruit and pay twelve undergraduates to work part-time in teams of two over a six-month period. Each team was assigned to a partner organization to conduct a research, advocacy, or outreach project identified by the organization as central to advancing their mission in the community. Projects included mapping service gaps in local food assistance programs, identifying potential collaborators on affordable housing projects, developing rental resources for unhoused individuals, and designing educational workshops for a neighborhood-based initiative to address community needs in the wake of a major flood.

As a core ethical tenet of community-engaged research, the commitment to societal impact extends to every stage in CEJA’s projects, from research design through the post-research stage. Throughout, CEJA considers a number of ethical questions rooted in this commitment. How can the project best honor community knowledge, capacities and priorities? How can it increase the capacity of community participants, as well as partners, to understand and act to change the forces and structures that shape their lives? How can the project enhance the inclusion of and access to information and resources among the most underresourced parts of the community? In this regard, CEJA – in line with ethical CER practices – seeks to ground the research process in an ethical framework that has community impact and social justice at its core.

Discussion: Reflections and Conclusions

This analysis of ethics in community-engaged research yields several preliminary conclusions and reflections.

1) As CER has become more widespread as a research practice across multiple fields in the social sciences, the search for a durable system of ethical principles and procedures to guide and support CER projects has assumed increasing importance. Researchers seeking to adopt practices in their work that more fully reflect the ethical commitments of CER confront a dilemma. The choices and challenges they face sometimes sit uneasily within – or outside the parameters of – the established system of ethical principles that governs most research involving human participants. A robust ethics of CER cannot be fully envisioned or developed within the dominant Belmont-informed ethical paradigm, given the tensions between the two. Nor can it be developed entirely outside the existing paradigm, as long as researchers are obligated to adhere to Belmont principles.

2) Navigating this dilemma begins with an understanding of how the purposes and practices of distinct forms of research involving human participants arise out of their respective methodological histories. These histories inform the intentions and purposes of the research, the role of human participants within it, and the specific ethical imperatives that emerge as obligations to the participants and the research they make possible.

• An historically-informed view of the two research orientations and underlying ethical systems examined here reveals where and why the two converge and diverge. The Belmont system is rooted in an ethical paradigm designed above all to protect participants from potential harms, a reflection of its origins in revelations of abuses in biomedical research after World War II. Decades later, its continued dominance is sustained in part by the fact that 75 percent of research reviewed by IRBs was clinical or biomedical (AAUP 2001). The procedures developed by the Belmont Commission to assess research reflect the context in which the system developed – one in which researchers design and control projects, under carefully crafted clinical or experimental conditions, in which research participants serve as subjects of study.

• The purposes and ethical imperatives of community-engaged research likewise emerge from the historical context in which CER originated and evolved. CER practices have historically engaged communities in cycles of inquiry, reflection and action to address community needs and larger social structures that produce disadvantage. The ethical imperative is to engage, collaborate, and participate in co-producing knowledge for social change. Research is designed and conducted alongside community members and/or partners whose experiences and insights are central to the enterprise, and the aim is to increase their capacity not only to generate knowledge but also to understand and act on their circumstances.

• Points of convergence between these two ethical paradigms include the commitments to defend the well-being and privacy of participants, to secure their informed consent, and to “do no harm.” Yet there are multiple points of divergence. The Belmont system is largely silent on important CER ethical principles, including the imperatives to enhance participation and engagement, to honor local knowledge, to strengthen the capacity of community partners to produce broader social good (beyond the benefit of study participants), to build relationships with them, and to challenge power imbalances in and through the research process.

• 3) In practice, the pursuit of ethical CER poses a two-part challenge. Practitioners must determine how to comply with current institutional review requirements grounded in the Belmont code in ways that respect and protect CER principles. At the same time, they have to make decisions (about program design, development, and allocation of resources, for example) that reflect and reinforce CER ethical imperatives that lie beyond the scope of the Belmont system. Doing so requires expanding the current parameters of ethical consideration. Researchers and practitioners have pursued a number of sometimes overlapping approaches toward this end, including three common strategies:

• b) A second strategy is to pursue reforms in IRB processes, as applied to CER projects. Reform proposals have included integrating community members into the IRB process itself (sometimes by creating community review boards); incorporating discussions of risks and benefits beyond those faced by individual participants (Michelen et al., 2025); establishing formal mechanisms for dialogue between CER researchers and institutional reviewers (Eder, 2023); creating informed consent forms and researcher training protocols that are culturally appropriate for community members and partners; and allowing for approval of partial or “umbrella” research protocols, to avoid delays in the start-up of research projects and the approval of adjustments along the way (Windsor et al., 2024). Recent surveys suggest an openness among many IRB administrators to incorporating these and other reforms to make the review process more amenable to CER practices (Cargill et al., 2025).

• c) A third strategy pursued by CER researchers and practitioners is to focus on developing a clearer and more robust framework for conducting and evaluating ethical CER independent of existing institutional review processes. This strategy seeks to address the elements of ethical CER that extend beyond the parameters of the standard review system, and concentrates on the need to evaluate projects by the principles and standards of CER ethics. Practitioners have produced suggested guidelines and resources to advance this strategy (see Grain, 2020 for example). This approach has also been addressed in recent academic literature, to examine, for example, how this approach might be used with specific vulnerable populations (Dickens, 2025); in challenging geographic contexts (Peterson et al., 2025); and in different fields (McFarlane et al., 2025; Zent et al., 2025).

4) As practitioners pursue strategies for a more ethical CER, their reflections on praxis (including case studies of CER projects) reveal how and where ethical dilemmas and conflicts can arise in the day-to-day practice of community-engaged research, either as a result of tensions with IRB rules, or because of ethical challenges inherent in CER. The experiences of CEJA, along with other CER case studies considered in this analysis, confirm that the contradictions between the two ethical paradigms discussed above are not abstract or theoretical: they exist in practice. The tensions can emerge in various forms and at various stages in the research process, from research design, to data collection, to the post-research stage, as CEJA’s experience demonstrates, and practitioners are drawing lessons and identifying more effective practices for addressing them.

5) Scholarly literature on these questions has grown in recent years, including across disciplines and national boundaries. The literature at times displays a divide between works that engage issues of theory and principle, and those that provide practical guidance. By examining the historical origins of ethical paradigms, the distinct principles they embody, and the ways these arise and are pursued in practice, we aim to help close this gap through combining systematic reflection on ethical considerations with lessons learned on the ground in the conduct of CER projects.

This analysis points to several promising avenues for future research. CER scholarship would benefit from closer and more detailed attention to the specific ethical tensions that community-engaged researchers confront in their research projects, and to varying strategies for navigating them. Attention to these questions at particular project stages (such as research design and data collection) can provide opportunities for researchers to adopt effective practices across different contexts. Equally important, further work is needed on how and why the principles and practices of ethical community-engaged research are best developed in collaboration with communities themselves, as their understandings of research obligations, benefits, and risks may differ from those of academic researchers (Grain, 2020; Isler & Corbie-Smith, 2012). Additionally, there is a need for greater discussion and analysis of potential reforms of Institutional Review Board structures and practices that align more closely with CER ethics (such as establishing community review boards or allowing phased approval of research designs and protocols). To date there have been few systematic studies of reform efforts and their results. Finally, the field would gain from further work that brings together theory and practice. Case studies that assess and compare different CER experiences – especially in the context of ethical reflections on CER – are particularly helpful in this regard (see Poyntz et al., 2025). Studies of CER as praxis, combining reflection and action, are critical in considering how best to realize a robust ethics of community-engaged research.