Content uploaded by Adrian Guta
Author content
All content in this area was uploaded by Adrian Guta on Jul 22, 2020
Content may be subject to copyright.
Ethical Issues in Community-Based,
Participatory, and Action-Oriented
Forms of Research
31
State of the Field and Future Directions
Adrian Guta and Jijian Voronka
Contents
Introduction ...................................................................................... 562
Reflexive Note ......... ............................................... ....................... 562
Background ...................................................................................... 563
Defining Community-Based, Participatory, and Action-Oriented Forms of Research ..... 563
The Problem of Ethics . . . . . .................................................................. 564
Key Issues . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 565
Current Debates . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .. . . . . . . 566
Ethics Review as Barrier . . .................................................................. 566
Ethics Review as Opportunity ............................................................... 566
Beyond the Traditional Review . ............................................................ 567
Ethics and Rigor in CBPAR . . . . ............................................................. 568
Critical Intersections . . ....................................................................... 568
Toward a Resolution? . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .. . . 570
Future Issues ..................................................................................... 570
Conclusion ....................................................................................... 571
References...... ................................................. ................................ 572
Abstract
This chapter explores ethical issues in community-based, participatory, and action-
oriented forms of research (CBPAR). These approaches to research have evolved
from diverse philosophical, theoretical, and disciplinary traditions but share a
commitment to bringing researchers, community members (those most affected
by a social or health issue), and other relevant stakeholders together in meaningful
ways to conduct research (e.g., to co-develop the research questions, collect and
analyze the data, and disseminate the findings). This level of collaboration between
the researcher and the researched is understood to blur traditional boundaries and
A. Guta (*) · J. Voronka
School of Social Work, University of Windsor, Windsor, ON, Canada
e-mail: aguta@uwindsor.ca
© Springer Nature Switzerland AG 2020
R. Iphofen (ed.), Handbook of Research Ethics and Scientific Integrity,
https://doi.org/10.1007/978-3-030-16759-2_24
561
safeguards, and raises important questions about ethics and scientificintegrityin
CBPAR. This chapter will provide an overview of key debates in the social science
and research ethics literature about the suitability of contemporary research ethics
review processes for CBPAR. In addition to discussing the ethics review process,
this chapter will also explore emerging scholarship about what it means to be an
ethical researcher working in a CBPAR tradition and negotiating different concep-
tions of science, ethics, and worldviews.
Keywords
Community-based research · Participatory research · Action research · Peer
researchers · Ethics · Barriers · Opportunities
Introduction
This chapter explores ethical issues in community-based, participatory, and action-
oriented forms of research (henceforth CBPAR) which have grown in popularity in
the past few decades among researchers, communities, charities and nonprofits, health
and social services, research funders, and governments (Milton et al. 2011;Salimietal.
2012;Woolfetal.2016). These approaches to research have evolved from diverse
philosophical, theoretical, and disciplinary traditions but share a commitment to bring-
ing researchers, communities (those most affected by a social or health issue), and other
relevant stakeholders together in meaningful ways to conduct research and generate
useful evidence (e.g., to co-develop the research questions, collect and analyze the data,
and disseminate the findings) (Aldridge 2016; Chevalier and Buckles 2013; Wallerstein
et al. 2017). These approaches may improve the quality of the research and have broad
impact through policy change that improves community level conditions and health
outcomes (Balazs and Morello-Frosch 2013;Greenhalghetal.2016;Jagoshetal.2015).
This level of collaboration between the researcher and the researched is understood to
blur traditional boundaries and safeguards and raises important questions about ethics
and scientific integrity (Fox 2003). This chapter will provide an overview of key debates
in the social science and research ethics literature about the suitability of contemporary
research ethics review processes for CBPAR. Beyond the review process, this chapter
will also explore what it means to be an ethical researcher working in a CBPAR tradition
and negotiating different conceptions of science, ethics, and worldviews.
Reflexive Note
Before entering this discussion, we believe it is important to locate ourselves as
scholars in relation to CBPAR. Together we have lengthy experience conducting
research on sensitive issues with socially and economically marginalized communi-
ties, navigating the ethics review process across numerous institutions, and responding
to complex ethical issues in the field. Adrian Guta has training in social work, public
health, and bioethics and has been involved in community-engaged research for
562 A. Guta and J. Voronka
15 years in Canada. With HIV as a central focus, these studies have explored elements
of sexuality, substance use, and other sensitive issues, and he has written about the
ethical and methodological implications of CBPAR (Guta et al. 2010b,2012,2013a,
2016; Strike et al. 2015,2016). His service on institutional review boards (IRBs)
includes a unique HIV-specific review board at the University of Toronto with a
mandate to review CBPAR. Jijian Voronka has training in sociology, equity studies,
and social justice education and uses critical disability and mad studies perspectives to
elucidate confluences of power that negatively affect disabled people within health,
social service, research, and education systems. Her work prioritizes mental health
service user knowledges through community-based, service user-led, and narrative
inquiry and analysis (Voronka 2013,2017,2019a). She also holds experiences of
“being included”in research projects as a peer researcher, most notably the At Home/
Chez Soi Project, a national research demonstration project on how to best house and
serve the “chronically homeless mentally ill”in Canada (Adair et al. 2016; Nelson
et al. 2016;Piatetal.2015; Silva et al. 2014; Voronka 2019b).
Background
Defining Community-Based, Participatory, and Action-Oriented
Forms of Research
A comprehensive historical overview of community-based, participatory, and
action-oriented forms of research, each with their own histories, is beyond the
scope of this chapter, but we highlight some key elements under the broad umbrella
of community-engaged research and scholarship (Calleson et al. 2005; Mikesell
et al. 2013). Strand et al. (2003a) have identified three core influences: (1) the popular
education model, (2) the action research model, and (3) the participatory research
model. The popular education model draws on the critical pedagogy of Paulo Friere
(1993) and aims to democratize education for those whose access has been restricted
and whose knowledge has been excluded. As applied to research, this approach
emphasizes the need to engage communities in identifying problems and generating
solutions to improve their local conditions. Second, the action research model is
most often associated with the pioneering work of psychologist Kurt Lewin who
advanced the claim that social research could be coupled with action components
and influence social change (Adelman 1993; Lewin 1946). The emphasis on pro-
ducing change within local organizations and systems has been taken up in the
development of partnerships between universities, communities, nonprofits, and
charitable groups. Finally, the participatory research model that emerged out of
community development efforts throughout the 1960s–1970s in the global south
has been highly influential (McTaggart 1997) and has been taken up in the global
north to address a range of social issues (Cornwall and Jewkes 1995; Nelson and
Wright 1994). These approaches recognize the importance of involving “lay”people
in research for their lived expertise which complements the technical knowledge of
researchers. Most recently, the role of community has become central. While
31 Ethical Issues in Community-Based, Participatory, and Action-Oriented... 563
community is a complex and contested term, it is understood to reflect shared
conditions and experiences (e.g., people who use drugs, people living with HIV,
people labelled with intellectual and psychiatric disabilities). Two related approaches
have emerged, the first being community-based research (CBR) in the sociological
tradition of Stoecker (2003,2012) which includes community organizing, collabo-
ratively identifying community issues, action planning, and implementation and
evaluation. The second has been community-based participatory research (CBPR)
which has been widely advanced for public health research (Israel et al. 2008;Minkler
et al. 2003; Wallerstein et al. 2017). Offering a synthesis of multiple traditions, CBPR
has promoted a set of core principles to guide research: be community driven; have
community relevance; collaboration and partnerships; capacity building; attending to
process; recognizing multiple forms of knowledge; and being action and outcomes
oriented (Israel et al. 1998;Strandetal.2003b). Our respective approaches to CBPAR
draw on theoretical insights and applied techniques from these bodies of literature but
emphasize the importance of employing critical theory and reflexivity for understand-
ing how power operates within university and community collaborations and the
potential for exploitation (Guta et al. 2013a,2014b; Voronka 2016).
The Problem of Ethics
Orientations to research which engage those most affected by a social or health issue
in the research process are often described as responding to a broad ethical mandate
to democratize the research process (Park 1997) and promote a higher standard for
ethical conduct in research than is typically required (Flicker et al. 2007). Yet, the
“transgressive”nature of this research, which has been described as blurring the lines
between the researcher and the researched (Fox 2003), has come into conflict with
normative conceptions of research ethics. Typically, research ethics review frame-
works, guidelines, and review bodies rely on a positivistic biomedical approach to
research ethics with narrow conceptions of autonomy, vulnerability, and harm
(Hoeyer 2006; Hoeyer et al. 2005). These issues are not limited to CBPAR and
have been well discussed in relation to social science research broadly (Haggerty
2004) and qualitative research in particular (Hedgecoe 2008). While we refer readers
to other chapters in this volume (see issues covered in Parts I and II of this handbook
in particular), we note that biomedical research is typically characterized by designs
where risks for participants are known, well-articulated, and mitigated through
minimal contact with research “subjects”and fixed research procedures. Ethics
review boards have been criticized for being more favorable to protocols that follow
these standard approaches while penalizing those using more fluid and relational
approaches. In the early years of the debate, Downie and Cottrell (2001, pp. 9–10)
argued that traditional IRBs are not equipped to review “nontraditional”methods
such as those used in CBPAR; the review process offers little guidance in respect to
community-engaged and participatory research; the process is “frustrating and
demoralizing,”takes too long, and fails to address ongoing ethical issues. The
early literature typically contrasted traditional ethics review with the goals of
564 A. Guta and J. Voronka
community-engaged research (Blake 2007; Boser 2006,2007; Martin 2007; Rolfe
2005; Shore 2006). In the following sections, we explore key issues and consider
recent developments in the scholarship.
Key Issues
Following some early important contributions to the literature on ethical issues in
CBPAR, an entire field of scholarship has emerged. This includes reviews of the
literature about ethical issues in CBPAR (Fouché and Chubb 2017; Kwan and Walsh
2018; Mikesell et al. 2013; Souleymanov et al. 2016; Wilson et al. 2018) and
considerable attention in ethics journals (see, e.g., the numerous articles in the
Journal of Empirical Research on Human Research Ethics). Drawing on this
growing body of literature, we identify some key issues which, while relevant to
all forms of social science research, may pose unique challenges for CBPAR teams
during the review process. As noted previously, CBPAR is likely to employ inno-
vative community engagement strategies and research methods which blur tradi-
tional lines between the researcher and the researched. Such approaches include the
use of arts-based methods (Creighton et al. 2018; Switzer et al. 2015), developing
new sampling and recruitment techniques (Hanza et al. 2016; Simon and Mosavel
2010; Travers et al. 2013), and the involvement of community members in various
stages of the research process (Flicker et al. 2015; Greer et al. 2018a; Newman et al.
2011; Switzer et al. 2018). From the perspective of research teams, this level of
engagement enables community members to be actively involved in the research
process and to collect different forms of evidence. However, IRBs may not be
familiar with these approaches and may have concerns about the potential for
participants (or those who they understand to be participants regardless of their
actual role in the project) to be harmed. CBPAR often focuses on highly marginal-
ized communities which are considered vulnerable to research exploitation because
of their social location or individual characteristics (e.g., people who use drugs,
people engaged in sex work, homeless people, and people living with HIV).
Researchers have argued that the use of CBPAR can mitigate participants’vulner-
ability and ensure individual and collective needs are considered in the research
process (Campbell-Page and Shaw-Ridley 2013; Perez and Treadwell 2009). A
related issue which has received much attention is compensation, with the concern
being that economically marginalized individuals (especially people who use drugs)
will be unduly influenced to participate. The approach taken by CBPAR projects is to
equitably compensate community members for their knowledge (Black et al. 2013).
Finally, and often of greatest concern to IRBs are the issues of informed consent and
confidentiality. CBPAR often engages community leaders which is understood as
necessary to get community “buy-in,”but concerns have been raised that other
community members may feel pressured to participate when “invited”by high-
profile members of their community (Brear 2018). As well, CBPAR is often
conducted in partnership with community-serving organizations (e.g., the sole health
center in a community that offers services for sex workers) and in organizational
31 Ethical Issues in Community-Based, Participatory, and Action-Oriented... 565
settings (e.g., recruitment is being conducted in the lobby). For IRBs this raises
concerns about whether participants will feel they can refuse to participate when the
invitation comes from a trusted source or healthcare provider who controls access to
programs, services, and resources (Strike et al. 2016). Finally, and by extension of
the involvement of community members and organizations where there may be
pre-existing relationships, concerns have been raised about the limits of confidenti-
ality in small, close-knit, and identifiable communities (Guta et al. 2014a; Petrova
et al. 2016). The concern from IRBs is that individual level data can become
identifiable to community members on the research team involved in analysis and
even the broader community during dissemination. This is further complicated by
the desire of some community members to be named in the research despite the
potential risks to them (Teti et al. 2012).
Current Debates
Ethics Review as Barrier
In the years since scholars first raised concerns about the relevance of traditional IRB
review processes for CBPAR (Downie and Cottrell 2001), this has remained a pressing
issue (Fouché and Chubb 2017; Wilson et al. 2017). Some ongoing barriers identified
are slow processes, administrative oversights, difficult communications, and long
delays (Tamariz et al. 2015). Considering the need for an ethics certificate to release
funds for the project to start, and pressures to produce within academic tenure and
promotion cultures which may not understand CBPAR processes (e.g., why it takes so
long to build relationships) (Castleden et al. 2015), delays in IRB review can be very
impactful on CBPAR teams. One reason reported for long delays has less to do with
research ethics than with reputational and risk management for IRBs and universities
(Malone et al. 2006). Others have argued that IRB reviews can introduce new ethical
issues based on poor understandings of community needs (e.g., asking for protections
that may inadvertently increase risk to participants) or overlooking important ethical
issues because of their lack of knowledge about CBPAR and community norms (Cross
et al. 2015;Gutaetal.2010b). Unfortunately, long delays and unhelpful comments
from IRBs have led some researchers to see ethics review as a little more than a “hoop”
to jump through which does little to prepare them for the actual process issues which
emerge in the field (Guta et al. 2016).
Ethics Review as Opportunity
In the aptly titled “The research ethics committee is not the enemy,”Wolf (2010) has
identified misunderstanding and confusion within and between IRBs and CBPAR
teams, but there are opportunities for improving these relationships and the review
process for all. Notably, some IRBs have improved their review processes by
explicitly recognizing CBPAR research, providing board members and staff with
566 A. Guta and J. Voronka
education, and doing outreach to researchers and their community partners (Guta
et al. 2010b,2012). In a study of IRB stakeholders, participants described wanting to
have more relational review models (similar to popular practices in CBPAR) which
would allow them to work in better ways with researchers to help flag potential
ethical issues and how to address them and avoid harsh and protracted reviews (Guta
et al. 2012). However, they described being constrained by external factors such as
lack of funding for IRBs which limits the amount of time they can spend on
individual files (Guta et al. 2013b). In the same study mentioned above which
identified ethics review as a “hoop,”some participants characterized it, despite its
challenges and limitations, as an important part of the research process and necessary
requirement to protect participants and communities (Guta et al. 2016).
Beyond the Traditional Review
Following critiques that IRBs are not adequately preparing CBPAR teams with their
reviews, early work by Flicker et al. (2007) called on IRBs to shift their review
paradigm toward community interests and expand their review criteria to consider
community involvement in the design, minimizing barriers to community participa-
tion, protecting vulnerable groups (not just individuals), risks and benefits at the
community level, how unflattering data will be handled, and community level
consent and confidentiality. In parallel with the process to improve and expand the
traditional review has been a growing interest in “ethical work”in CBPAR which is
done after the review, in the field, and over the life of the project and is framed as
relational and contextual. Minkler (2004) has called on CBPAR researchers to reflect
on whether they are (a) achieving a true “community-driven”agenda; (b) reflecting
on insider-outsider tensions; (c) addressing real and perceived racism;
(d) considering the limitations of “participation;”and (e) anticipating and preparing
for issues involving the sharing, ownership, and use of findings for action. More
recently, Banks et al. (2013) have emphasized the social justice nature of CBPAR
and the need to consider the ethics of partnership, collaboration, blurring of bound-
aries between researchers and the researched, community rights, community con-
flict, and democratic participation. Some scholars have turned away from principles-
based thinking to nonnormative conceptions of ethics which emphasize researcher
qualities and characteristics, such as virtue ethics which identifies key virtues (e.g.,
compassion and humility) that researchers should cultivate (Banks et al. 2013;
Schaffer 2009). Relatedly, but drawing on poststructural understandings of ethics
attuned to history, power, and language, others have asked how CBPAR researchers
cultivate an individual ethics through their interactions with members of their
research team, participants, and the broader communities they work with (Guta
et al. 2016; Voronka 2019a). In all, this emerging body of research recognizes that
CBPAR brings researchers and communities together in ways that are not typical of
other forms of research (e.g., a long partnership development phase pre-funding,
numerous meetings, extended engagement in the field, and collaborative analysis,
writing, and dissemination activities) which are understood to improve the quality
31 Ethical Issues in Community-Based, Participatory, and Action-Oriented... 567
of the research but also creates opportunities for conflict, unmet expectations, and
the potential for harmful power dynamics to emerge. In sectors where CBPAR is an
expectation (e.g., HIVand research with Indigenous peoples in Canada), the stakes
are very high for both academic and community partners for partnerships to
succeed.
Ethics and Rigor in CBPAR
The close working relationships that characterize CBPAR, and the considerable
investment of time and resources by those involved, have led some to raise questions
about the scientific quality of the scholarship. In a recent scoping review, Wilson
et al. (2018) identified a number of issues related to validity and research integrity in
community-engaged research, including the lack of appropriate expertise within a
community to conduct the research, the potential for coercive relationships and the
impact of the quality of the data, challenges related to balancing validity with
community needs, altering unflattering data, and emphasizing relationships at the
expense of consistent application of rigorous research protocols. Early in the debate,
Melrose (2001) asked the question “why would you want to”in response to the issue
of rigor in action research and argued that while ethical considerations are of central
concern, rigor has numerous definitions and can also be interpreted as the require-
ments for flexibility and responsiveness. Many of the challenges to rigor and quality
in CBPAR are relevant to all forms of research, including clinical trials (e.g., when
trial staff are poorly trained and administer an intervention inconsistently). However,
this appears to have been made more of an issue in CBPAR because of its explicit
political commitments. In respect to the issue of managing “unflattering data,”we
suggest CBPAR teams explore the potential for such data emerging in advance, and
the implications for the partnering organizations and the broader community, and
plan strategies for how to handle it which reduces the risk of decisions to hold back
certain findings being made arbitrarily. Finally, some of these challenges should be
linked to the tension created by government funding bodies which are pushing
universities and community-serving organizations together without proper resources
and linking program funding with positive research outputs (Guta et al. 2014b). It is
perhaps not surprising then that some community-based organizations might be
reluctant to share findings which could reduce their ability to obtain future funding
and continue to serve their community constituents.
Critical Intersections
In this section we focus on an issue that crosses both traditional and emergent
conceptions of research ethics and with which we have personal experience. A
popular approach for engaging community members with lived experience in
CBPAR projects, especially in the HIV and mental health sectors, is popularly
referred to as “peer research.”Peer researchers [also known by other names such
568 A. Guta and J. Voronka
as “community researchers”] are members of the target community being researched
who have relevant lived experience (e.g., a mental health diagnosis, injecting drugs,
engaging in sex work) and who actively participate as co-researchers (Greene et al.
2009; Guta et al. 2013a; Voronka et al. 2014). There is no single definition or
approach to engaging peers, and in some projects, they may be central members of
the research team (e.g., a co-investigator listed on the grant which funds the project),
whereas in other projects their role is more instrumental (e.g., they are hired after the
grant is funded to facilitate participant recruitment). IRBs which are not familiar with
peer research approaches may not understand the difference between peers and
research participants and may consider the paid work they are doing to fall under
their purview (e.g., raising concerns about the vulnerability of peers). This may be
further complicated when peers serving as project leads are paid (recognizing that
unlike university-based researchers, they need financial support to attend meetings
and contribute) and when teams also capture process data from peers about their
involvement to share with other CBPAR teams using the approach (Greene et al.
2009). Thus, peers may be part of the research team, project staff, and participants.
IRBs have also been concerned about whether peer researchers can maintain ethical
standards when working in their communities in such roles as recruiters (Bean and
Silva 2010; Simon and Mosavel 2010). Being part of the community is what makes
peer researchers excellent recruiters and data collectors, but this can also put
individual peer researchers in uncomfortable situations when researching with
people they know (Guta et al. 2013a; Logie et al. 2012). Some safeguards for
peers and participants include asking peers not to collect data from anyone they
know personally (although this may undermine their ability to do their work and
should be considered on a case-by-case basis) and giving participants the option to
be interviewed by a peer or another member of the research team if they prefer not to
share personal information with someone from their own community.
Beyond the IRB review, there are additional ethical issues related to how peers are
integrated, trained, and supported (Flicker et al. 2010; Guta et al. 2010a; Roche et al.
2010). Whereas graduate students may receive considerable training and support
before entering the field for the first time, and throughout the life of a project, peers it
seems are often simply expected to know what to do and manage their affects (e.g.,
being emotionally triggered when entering certain community spaces). While peer
researchers play a very important role in projects, sometimes being the difference
between community buy-in and success or failure, they have reported feeling poorly
treated by members of their research teams, not having their knowledge and contri-
butions valued, and even being penalized for not conforming to university norms
despite having been recruited for their lived experience of marginalization (Damon
et al. 2017; Guta et al. 2013a). The confusion peer researchers pose to IRBs is often
extended to other parts of universities like human resources and finance departments
which are not sure if peers are employees and how to pay them. Payment for peers is
a highly contested issue with any rewards for peers often falling well below other
research staff, despite calls for peer compensation to be fair and equitable. Compli-
cating this is the lack of payment standards and considerations for peers receiving
social supports which could be compromised if they are seen to be employed (Greer
31 Ethical Issues in Community-Based, Participatory, and Action-Oriented... 569
et al. 2018b). The lack of standards for peer work combined with their structural
vulnerability can lead to unfair and exploitive working conditions and unmet
promises. Damon et al. (2017) have suggested the need for a grievance process to
hold researchers accountable in highly researched communities. Finally, concerns
have been raised about the sustainability of peer models and the tendency for
projects to have bursts of activity where peers are intensively engaged followed by
long periods of inactivity where peers feel isolated and no guarantees of future
funding beyond a single project (Guta et al. 2016).
Toward a Resolution?
Scholars have offered best practices to resolve the tensions between CBPAR teams
and IRBs which include modifying existing review requirements to be more
responsive to partnered research models, to permit flexibility, to allow for multi-
stage or staggered review processes, and to promote training of researchers and
IRB stakeholders in each other’s respective languages and needs, reducing the
requirements for final research instruments, and adopting strategies from research
in emergency clinical research to better respond to emerging challenges (Cross
et al. 2015). We find these to be promising options but add that the work should
start at higher levels if it is to be taken up by individual IRBs. For example, the
governing ethics framework in Canada is the Tri-Council Policy Statement:
Ethical Conduct for Research Involving Humans (TCPS-2) (2014b)whichisin
its second iteration and recognizes community-based and participatory forms of
research, research partnerships, and the need to adapt to community level practices
and culture. The TCPS-2 recognizes that, “In some cases, participants hold equal
or greater power in the researcher-participant relationship, such as in community-
based and/or organizational research when a collaborative process is used to define
and design the research project and questions...”(see TCPS-2 Chap. 10, Quali-
tative Research 2014a, p. 142). Having the governing ethics document not only
acknowledge CBPAR approaches but also advance a nuanced understanding of
power holds the potential for systemic change as all Canadian IRBs must be in line
with the TCPS-2. This may be more challenging in the United States with the
Belmont Report, multiple regulations, and state laws and internationally with
hundreds of competing protections (International Compilation of Human Research
Protections 2019). We do not mean to suggest that IRB reviews should be
standardized, especially globally, but there may be ways of streamlining them
that would benefit CBPAR and researchers in general.
Future Issues
As CBPAR continues to go from the “margins to the mainstream”(Horowitz et al.
2009), we are concerned that increased inducements for researchers to engage
communities have not been matched with improved training and supports to ensure
570 A. Guta and J. Voronka
that ethical standards are met. Indeed, CBPAR may be moving away from its original
social justice goals toward becoming enmeshed in the academic/industrial research
complex. There remain ongoing concerns about tokenism and inauthentic partner-
ships, as well as the increased burden placed on individuals, communities, and
organizations, as well as failed promises of capacity building and reciprocity for
community members. A key feature of some traditions within the CBPAR umbrella
is the goal to build the capacity of communities to conduct their own independent
research without university-based researchers (e.g., the Canadian HIV community-
based research movement and the mental health survivor research movement), but
the trend has been toward more complex research designs, larger teams (comprising
of numerous researchers and partnering organizations), and few opportunities for
community-based organizations to take the lead (for a discussion of ethical issues in
survivor research, see Faulkner 2004). If anything, the need for a community and
university partner has been galvanized. There have been calls in the literature for
nuanced explorations of power within CBPAR teams, with Muhammad et al. (2015)
calling for greater reflexivity and resistance in the academy to promote social justice
research. Kwan and Walsh (2018, p. 370) have identified a number of gaps in the
CBPAR literature related to ethical guidance in “(i) balancing community values,
needs, and identity with those of the individual; (ii) negotiating power dynamics and
relationships; (iii) working with stigmatized populations; (iv) negotiating conflicting
ethical requirements and expectations from [IRBs]; and (v) facilitating social action
emerging from the findings.”We invite scholars to move beyond uncritical celebra-
tions of community involvement and claims that “the entire community was
involved”to consider what is made possible by CBPAR and the risks and broader
impacts on communities when these things go wrong (Mayan and Daum 2016). We
end with some challenging and provocative questions raised by Glass et al. (2018)
about the possibility of doing ethical research considering “the ethicality of research
practices and universities themselves”and that CBPAR cannot address these issues
on its own. This invites readers to think about the ways in which certain philoso-
phies, approaches, and methods become ethically problematic within oppressive
research contexts and that the work of improving IRB reviews is about more than
expediting the flow of research dollars but promoting a conception of “research
ethics as a praxis of engagement with aggrieved communities in healing from and
redressing historical trauma”(Glass et al. 2018, p. 503).
Conclusion
In this chapter we have identified and discussed major ethical issues in CBPAR, an
umbrella term we have used to cover a range of community-based, participatory, and
action-oriented forms of research which are characterized by the coming together of
researchers and those who are typically researched. There has been considerable
interest in a range of disciplines about the potential for such research partnerships to
improve the quality of research and its usefulness. CBPAR has pushed the bound-
aries of traditional methods and expanded the role of the academic to include
31 Ethical Issues in Community-Based, Participatory, and Action-Oriented... 571
community engagement. However, these approaches have raised new ethical issues
both in terms of formal IRB reviews which rely on principles and procedures and for
those immersed in the work who grapple with the ethical dimensions of their
research practice. There are no easy solutions or quick fixes in complex projects
which bring highly privileged university-based researchers into partnerships with
community-based organizations (sometimes running on shoestring budgets) and
with individual community members who may be socially and economically
marginalized. Rather, what is created is an opportunity for ethical imagination and
thinking about how to promote and reconcile (where possible) multiple conceptions
of ethics.
References
Adair CE, Kopp B, Distasio J, Hwang SW, Lavoie J, Veldhuizen S, Voronka J, Kaufman AF,
Somers JM, SR LB, Cote S, Addorisio S, Matte D, Goering P (2016) Housing quality in a
randomized controlled trial of Housing First for homeless individuals with mental illness:
correlates and associations with outcomes. J Urban Health 93(4):682–697. https://doi.org/
10.1007/s11524-016-0062-9
Adelman C (1993) Kurt Lewin and the origins of action research. Educ Action Res 1(1):7–24
Aldridge J (2016) Participatory research: working with vulnerable groups in research and practice.
Policy Press, Bristol
Balazs CL, Morello-Frosch R (2013) The three Rs: how community-based participatory research
strengthens the rigor, relevance, and reach of science. Environ Justice 6(1):9–16
Banks S, Armstrong A, Carter K, Graham H, Hayward P, Henry A et al (2013) Everyday ethics in
community-based participatory research. Contemp Soc Sci 8(3):263–277
Bean S, Silva DS (2010) Betwixt & between: peer recruiter proximity in community-based
research. Am J Bioeth 10(3):18–19
Black KZ, Hardy CY, De Marco M, Ammerman AS, Corbie-Smith G, Council B et al (2013)
Beyond incentives for involvement to compensation for consultants: increasing equity in CBPR
approaches. Prog Community Health Partnersh 7(3):263
Blake MK (2007) Formality and friendship: research ethics review and participatory action
research. ACME Int EJ Crit Geogr 6(3):411–421
Boser S (2006) Ethics and power in community-campus partnerships for research. Action Res 4(1):9–21
Brear M (2018) Ethical research practice or undue influence? Symbolic power in community- and
individual-level informed consent processes in community-based participatory research in
Swaziland. J Empir Res Hum Res Ethics 13(4):311–322
Boser S (2007) Power, ethics, and the IRB: dissonance over human participant review of partici-
patory research. Qual Inq 13(8):1060–1074
Calleson DC, Jordan C, Seifer SD (2005) Community-engaged scholarship: is faculty work in
communities a true academic enterprise? Acad Med 80(4):317–321
Campbell-Page RM, Shaw-Ridley M (2013) Managing ethical dilemmas in community-based
participatory research with vulnerable populations. Health Promot Pract 14(4):485–490
Canadian Institutes of Health Research, Natural Sciences and Engineering Research Council of
Canada, and Social Sciences and Humanities Research Council of Canada (2014a) Tri-council
policy statement: ethical conduct for research involving humans. Chapter 10. Qualitative
research, pp 139–142, Ottawa. Retrieved from http://www.pre.ethics.gc.ca
Canadian Institutes of Health Research, Natural Sciences and Engineering Research Council of
Canada, and Social Sciences and Humanities Research Council of Canada (2014b) Tri-council
policy statement: ethical conduct for research involving humans. Ottawa. Retrieved from http://
www.pre.ethics.gc.ca
572 A. Guta and J. Voronka
Castleden H, Sylvestre P, Martin D, McNally M (2015) “Idon’t think that any peer review
committee... would ever ‘get’what I currently do”: how institutional metrics for success
and merit risk perpetuating the (re)production of colonial relationships in community-
based participatory research involving indigenous peoples in Canada. Int Indigenous
Policy J 6(4):2
Chevalier JM, Buckles DJ (2013) Participatory action research: theory and methods for engaged
inquiry. Routledge, Abingdon
Cornwall A, Jewkes R (1995) What is participatory research? Soc Sci Med 41(12):1667–1676
Costa L, Voronka J, Landry D, Reid J, Mcfarlane B, Reville D, Church K (2012) Recovering our
stories: a small act of resistance. Stud Soc Justice 6(1):85–101
Creighton G, Oliffe JL, Ferlatte O, Bottorff J, Broom A, Jenkins EK (2018) Photovoice ethics:
critical reflections from men’s mental health research. Qual Health Res 28(3):446–455
Cross JE, Pickering K, Hickey M (2015) Community-based participatory research, ethics, and
institutional review boards: untying a Gordian knot. Crit Sociol 41(7-8):1007–1026
Damon W, Callon C, Wiebe L, Small W, Kerr T, McNeil R (2017) Community-based participatory
research in a heavily researched inner city neighbourhood: perspectives of people who use drugs
on their experiences as peer researchers. Soc Sci Med 176:85–92
Downie J, Cottrell B (2001) Community-based research ethics review: reflections on experience
and recommendations for action. Health Law Rev 10(1):8–17
Faulkner A (2004) The ethics of survivor research: guidelines for the ethical conduct of research
carried out by mental health service users and survivors. Policy Press, Bristol
Flicker S, Travers R, Guta A, McDonald S, Meagher A (2007) Ethical dilemmas in community-
based participatory research: recommendations for institutional review boards. J Urban Health
84(4):478–493
Flicker S, Roche B, Guta A (2010) Peer research in action 3: ethical issues. Wellesley Institute,
Toronto
Flicker S, O’campo P, Monchalin R, Thistle J, Worthington C, Masching R, Guta A, Pooyak S,
Whitebird W, Thomas C (2015) Research done in “a good way”: the importance of indigenous
elder involvement in HIV community-based research. Am J Public Health 105(6):1149–1154
Fouché CB, Chubb LA (2017) Action researchers encountering ethical review: a literature synthesis
on challenges and strategies. Educ Action Res 25(1):23–34
Fox NJ (2003) Practice-based evidence: towards collaborative and transgressive research. Sociol-
ogy 37(1):81–102
Friere P (1993) Pedagogy of the oppressed: new revised 20th anniversary edition. Continuum, New
York
Glass RD, Morton JM, King JE, Krueger-Henney P, Moses MS, Sabati S, Richardson T (2018)
The ethical stakes of collaborative community-based social science research. Urban Educ
53(4):503–531
Greene S, Ahluwalia A, Watson J, Tucker R, Rourke SB, Koornstra J, Sobota M, Monette L, Byers S
(2009) Between skepticism and empowerment: the experiences of peer research assistants in HIV/
AIDS, housing and homelessness community-based research. Int J Soc Res Methodol 12(4):361–373
Greenhalgh T, Jackson C, Shaw S, Janamian T (2016) Achieving research impact through co-
creation in community-based health services: literature review and case study. The Milbank
Quarterly 94(2):392–429
Greer AM, Pauly B, Scott A, Martin R, Burmeister C, Buxton J (2018a) Paying people who use
illicit substances or ‘peers’participating in community-based work: a narrative review of the
literature. Drugs: Educ Prevent Policy:1–13
Greer AM, Amlani A, Pauly B, Burmeister C, Buxton JA (2018b) Participant, peer and PEEP:
considerations and strategies for involving people who have used illicit substances as assistants
and advisors in research. BMC Public Health 18(1):834
Guta A, Flicker S, Roche B (2010a) Peer research in action 2: management, support and supervi-
sion. Wellesley Institute, Toronto
Guta A, Wilson MG, Flicker S, Travers R, Mason C, Wenyeve G, O’campo P (2010b) Are we
asking the right questions? a review of Canadian REB practices in relation to community-based
participatory research. J Empir Res Hum Res Ethics 5(2):35–46
31 Ethical Issues in Community-Based, Participatory, and Action-Oriented... 573
Guta A, Nixon S, Gahagan J, Fielden S (2012) “Walking along beside the researcher”: how
Canadian REBs/IRBs are responding to the needs of community-based participatory research.
J Empir Res Hum Res Ethics 7(1):17–27
Guta A, Flicker S, Roche B (2013a) Governing through community allegiance: a qualitative
examination of peer research in community-based participatory research. Crit Public Health
23(4):432–451
Guta A, Nixon SA, Wilson MG (2013b) Resisting the seduction of “ethics creep”: using Foucault to
surface complexity and contradiction in research ethics review. Soc Sci Med 98:301–310
Guta A, Flicker S, Travers R, Wilson M, Strike S, Gaudry S, Binder L, O’Campo P, Kuzmanovic D
(2014a) HIV CBR ethics fact sheet #6: confidentiality in close-knit communities. Improving the
accessibility of research ethics boards for HIV community-based research in Canada. ON,
Toronto
Guta A, Strike C, Flicker S, Murray SJ, Upshur R, Myers T (2014b) Governing through commu-
nity-based research: lessons from the Canadian HIV research sector. Soc Sci Med 123:250–261
Guta A, Murray SJ, Strike C, Flicker S, Upshur R, Myers T (2016) Governing well in community-
based research: lessons from Canada’s HIV research sector on ethics, publics and the care of the
self. Public Health Ethics 10(3):315–328
Haggerty KD (2004) Ethics creep: governing social science research in the name of ethics. Qual
Sociol 27(4):391–414
Hanza MM, Goodson M, Osman A, Capetillo MDP, Hared A, Nigon JA, Meiers SJ, Weis JA,
Wieland ML, Sia IG (2016) Lessons learned from community-led recruitment of immigrants
and refugee participants for a randomized, community-based participatory research study. J
Immigr Minor Health 18(5):1241–1245
Hedgecoe A (2008) Research ethics review and the sociological research relationship. Sociology 42
(5):873–886
Hoeyer K (2006) “Ethics wars”:reflections on the antagonism between bioethicists and social
science observers of biomedicine. Hum Stud 29(2):203–227
Hoeyer K, Dahlager L, Lynöe N (2005) Conflicting notions of research ethics: the mutually
challenging traditions of social scientists and medical researchers. Soc Sci Med 61
(8):1741–1749
Horowitz CR, Robinson M, Seifer S (2009) Community-based participatory research from the
margin to the mainstream: are researchers prepared? Circulation 119(19):2633–2642
International Compilation of Human Research Protections (2019) Compiled by: Office for Human
Research Protections, U.S. Department of Health and Human Services. Retrieved from www.
hhs.gov
Israel BA, Schulz AJ, Parker EA, Becker AB (1998) Review of community-based research:
assessing partnership approaches to improve public health. Annu Rev Public Health 19
(1):173–202
Israel BA, Schulz AJ, Parker EA, Becker AB (2008) Critical issues in developing and following
community-based participatory research principles. In: Community-based participatory research
for health. Jossey-Bass, San Francisco, pp 47–62
Jagosh J, Bush PL, Salsberg J, Macaulay AC, Greenhalgh T, Wong G, Cargo M, Green LW, Herbert
CP, Pluye P (2015) A realist evaluation of community-based participatory research: partnership
synergy, trust building and related ripple effects. BMC Public Health 15(1):725
Kwan C, Walsh CA (2018) Ethical issues in conducting community-based participatory research: a
narrative review of the literature. Qual Rep 23(2):369–386
Lewin K (1946) Action research and minority problems. J Soc Issues 2(4):34–46
Logie C, James L, Tharao W, Loutfy MR (2012) Opportunities, ethical challenges, and lessons
learned from working with peer research assistants in a multi-method HIV community-based
research study in Ontario, Canada. J Empir Res Hum Res Ethics 7(4):10–19
Malone RE, Yerger VB, McGruder C, Froelicher E (2006) “It’s like Tuskegee in reverse”: a case
study of ethical tensions in institutional review board review of community-based participatory
research. Am J Public Health 96(11):1914–1919
574 A. Guta and J. Voronka
Martin DG (2007) Bureacratizing ethics: institutional review boards and participatory research.
ACME Int E-J Crit Geogr 6(3):319–328
Mayan MJ, Daum CH (2016) Worth the risk? Muddled relationships in community-based partic-
ipatory research. Qual Health Res 26(1):69–76
McTaggart R (ed) (1997) Participatory action research: international contexts and consequences.
SUNY Press, Albany
Melrose MJ (2001) Maximizing the rigor of action research: why would you want to? How could
you? Field Methods 13(2):160–180
Mikesell L, Bromley E, Khodyakov D (2013) Ethical community-engaged research: a literature
review. Am J Public Health 103(12):e7–e14
Milton B, Attree P, French B, Povall S, Whitehead M, Popay J (2011) The impact of community
engagement on health and social outcomes: a systematic review. Commun Develop J 47
(3):316–334
Minkler M (2004) Ethical challenges for the “outside”researcher in community-based participatory
research. Health Educ Behav 31(6):684–697
Minkler M, Blackwell AG, Thompson M, Tamir H (2003) Community-based participatory
research: implications for public health funding. Am J Public Health 93(8):1210–1213
Muhammad M, Wallerstein N, Sussman AL, Avila M, Belone L, Duran B (2015) Reflections on
researcher identity and power: the impact of positionality on community based participatory
research (CBPR) processes and outcomes. Crit Sociol 41(7-8):1045–1063
Nelson N, Wright S (1994) Power and participatory development: theory and practice. Intermediate
Technology Publications, Bradford
Nelson G, Macnaughton E, Curwood SE, Egalité N, Voronka J, Fleury MJ et al (2016) Collabo-
ration and involvement of persons with lived experience in planning Canada’s At Home/Chez
Soi project. Health Soc Care Commun 24(2):184–193
Newman SD, Andrews JO, Magwood GS, Jenkins C, Cox MJ, Williamson DC (2011) Peer
reviewed: community advisory boards in community-based participatory research: a synthesis
of best processes. Prev Chronic Dis 8(3)
Park P (1997) Participatory research, democracy, and community. Pract Anthropol 19(3):8–13
Perez LM, Treadwell HM (2009) Determining what we stand for will guide what we do: Commu-
nity priorities, ethical research paradigms, and research with vulnerable populations. Am J
Public Health 99(2):201–204
Petrova E, Dewing J, Camilleri M (2016) Confidentiality in participatory research: Challenges from
one study. Nurs Ethics 23(4):442–454
Piat M, Polvere L, Kirst M, Voronka J, Zabkiewicz D, Plante MC, Isaak C, Nolin D, Nelson G,
Goering P (2015) Pathways into homelessness: Understanding how both individual and struc-
tural factors contribute to and sustain homelessness in Canada. Urban Stud 52(13):2366–2382
Roche B, Guta A, Flicker S (2010) Peer research in action 1: models of practice. Wellesley Institute,
Toronto
Rolfe G (2005) Colliding discourses: Deconstructing the process of seeking ethical approval for a
participatory evaluation project. J Res Nurs 10(2):231–233
Salimi Y, Shahandeh K, Malekafzali H, Loori N, Kheiltash A, Jamshidi E, Frouzan AS, Majdzadeh
R (2012) Is community-based participatory research (CBPR) useful? A systematic review on
papers in a decade. Int J Prev Med 3(6):386
Schaffer MA (2009) A virtue ethics guide to best practices for community-based participatory
research. Prog Community Health Partnersh 3(1):83–90
Shore N (2006) Re-conceptualizing the Belmont Report: a community-based participatory research
perspective. J Community Pract 14(4):5–26
Silva DS, Bourque J, Goering P, Hahlweg KA, Stergiopoulos V, Streiner DL, Voronka J (2014)
Arriving at the end of a newly forged path: lessons from the safety and adverse events committee
of the at home/ Chez Soi Project. IRB 36(5):1–7
Simon C, Mosavel M (2010) Community members as recruiters of human subjects: ethical
considerations. Am J Bioeth 10(3):3–11
31 Ethical Issues in Community-Based, Participatory, and Action-Oriented... 575
Souleymanov R, KuzmanovićD, Marshall Z, Scheim AI, Mikiki M, Worthington C, Millson MP
(2016) The ethics of community-based research with people who use drugs: results of a scoping
review. BMC Med Ethics 17(1):25
Stoecker R (2003) Community-based research: from practice to theory and back again. Michigan J
Commun Serv Learn 9(2). N/A
Stoecker R (2012) Community-based research and the two forms of social change. J Rural Soc Sci
27(2):83
Strand K, Marullo S, Cutforth NJ, Stoecker R, Donohue P (2003a) Principles of best practice for
community-based research. Michigan J Commun Serv Learn 9(3):5–15
Strand KJ, Cutforth N, Stoecker R, Marullo S, Donohue P (2003b) Community-based research and
higher education: principles and practices. Wiley, San Francisco
Strike C, Guta A, De Prinse K, Switzer S, Carusone SC (2016) Opportunities, challenges and ethical
issues associated with conducting community-based participatory research in a hospital setting.
Research Ethics 12(3):149–157
Switzer S, Guta A, de Prinse K, Carusone SC, Strike C (2015) Visualizing harm reduction:
methodological and ethical considerations. Soc Sci Med 133:77–84
Switzer S, Carusone SC, Guta A, Strike C (2018) A seat at the table: designing an activity-based
community advisory committee with people living with HIV who use drugs. Qual Health Res
https://doi.org/10.1177/1049732318812773 (e-pub ahead of print)
Tamariz L, Medina H, Taylor J, Carrasquillo O, Kobetz E, Palacio A (2015) Are research ethics
committees prepared for community-based participatory research? J Empir Res Hum Res Ethics
10(5):488–495
Teti M, Murray C, Johnson L, Binson D (2012) Photovoice as a community-based participatory
research method among women living with HIV/AIDS: ethical opportunities and challenges. J
Empir Res Hum Res Ethics 7(4):34–43
Travers R, Pyne J, Bauer G, Munro L, Giambrone B, Hammond R, Scanlon K (2013) ‘Community
control’in CBPR: challenges experienced and questions raised from the Trans PULSE project.
Action Res 11(4):403–422
Voronka J (2013) Rerouting the weeds: the move from criminalizing to pathologizing “troubled
youth”in the review of the roots of youth violence. In: Le Francois B, Menzies R, Reaume G
(eds) Mad matters: a critical reader in Canadian mad studies. Canadian Scholars Press, Toronto,
pp 309–3222
Voronka J (2016) The politics of ‘people with lived experience’experiential authority and the risks
of strategic essentialism. Philos Psychiatry Psychol 23(3):189–201
Voronka J (2017) Turning mad knowledge into affective labor: the case of the peer support worker.
Am Q 69(2):333–338
Voronka J (2019a) Slow death through evidence-based research. In: Daley A, Costa L, Beresford P
(eds) Madness, violence, power. University of Toronto Press, Toronto (in press)
Voronka J (2019b) Storytelling beyond the psychiatric gaze: resisting resilience and recovery
narratives. Can J Disabil Stud 8(2):25 p (in press)
Voronka J, Wise Harris D, Grant J, Komaroff J, Boyle D, Kennedy A (2014) Un/helpful help and its
discontents: peer researchers paying attention to street life narratives to inform social work
policy and practice. Soc Work Mental Health 12(3):249–279
Wallerstein N, Duran B, Minkler M, Oetzel JG (eds) (2017) Community-based participatory
research for health: advancing social and health equity. Wiley, San Francisco
Wilson E, Kenny A, Dickson-Swift V (2018) Ethical challenges in community-based participatory
research: a scoping review. Qual Health Res 28(2):189–199
Wolf LE (2010) The research ethics committee is not the enemy: oversight of community-based
participatory research. J Empir Res Hum Res Ethics 5(4):77–86
Woolf SH, Zimmerman E, Haley A, Krist AH (2016) Authentic engagement of patients and
communities can transform research, practice, and policy. Health Aff 35(4):590–594
576 A. Guta and J. Voronka
