ADDRESSING THE ETHICAL CHALLENGES
COMMUNITY-BASED RESEARCH
OF
Mary Brydon-Miller
Educational Studies and Urban Educational Leadership, University of Cincinnati
Community-based and participatory research methods challenge
many commonly held beliefs regarding the basic nature of research and
the ethics that inform our research practices. Action research, the term
commonly used to refer to a broad range of these more collaborative
research approaches, “seeks to bring together action and reflection,
theory and practice, in participation with others, in the pursuit of
practical solutions to issues of pressing concern to people, and more
generally the flourishing of individual persons and their communities”
(Reason & Bradbury, 2001, p. 1). The core values of action research are
founded in “a respect for people and for the knowledge and experience
they bring to the research process, a belief in the ability of democratic
processes to achieve positive social change, and a commitment to action”
(Brydon-Miller, Greenwood, and Maguire, 2003, p. 15).
These core values can be translated into a set of basic principles that
inform the practice of action research throughout the research process.
The table shown below provides a structure for guiding ethical reflection
throughout the research process with the idea that researchers would use
this to generate a set of critical questions at each stage challenging them
to consider how their work reflects the key principles of Action Research.
(For examples of how this process might operate go to
http://www.arj-journal.blogspot.com and click on ethics.)
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The recently developed NIH/NSF guidelines for the responsible
conduct of research education incorporate many of the considerations,
including issues related to data acquisition and ownership, responsible
authorship and publication, and, most notably, a call for researchers to be
“responsible members of society” with a concern for the “environmental
and societal impacts of scientific research” (NIH, 2009). To be sure these
guidelines are still largely based on a more conventional set of
assumptions regarding the overall nature of the research endeavor,
the roles and responsibilities of the researcher, and the appropriate
strategies for insuring that research is conducted in an ethical
manner assumptions challenged by action researchers. Still, the
underlying principles reflect a shift toward the more engaged forms of
scholarship and more collaborative notions of knowledge generation
found in action research.
In my comments today I wish to focus on three specific moments
within the research process that currently challenge researchers in the
social sciences to reconsider their practice and discuss how these issues
might be addressed from the perspective of action research. The first
focuses on the issue of human subjects review processes, the second on
the challenges posed by various forms of digital data collection and
dissemination, and the last on what it means for the researcher to be “a
responsible member of society” and the demand that research contribute
to positive social and environmental change. Clearly these are topics each
of which might well merit a day-long symposium. My intention here is to
very briefly frame each issue, present a short example of how each takes
shape within an actual research setting, and suggest some preliminary
thoughts on how a re-examination of the issue through the lens of action
research might inform changes in research practice.
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Typically human subjects review processes are overseen by the
members of a university’s Institutional Review Board. These IRBs, made
up primarily of faculty researchers along with community representatives,
prison advocates, and individuals with legal expertise, are charged with
reviewing all research involving human subjects conducted by the faculty
and students of the institution. This system of oversight is based on the
assumption that the human subjects are not themselves involved in
control of the research process. The system as currently conceived
maintains a research process that is both hierarchical and patronizing, a
system that privileges the knowledge and experience of academic
researchers over that of those being researched. But an action research
model defines research as a collaborative effort in which the knowledge,
skills, and involvement of community partners are viewed as critical
components of the process. The principle of autonomy, which though
central to existing human subjects review processes is seen as confined to
the individual's ability to decline to participate, in an action research
model is understood to include the active involvement on the part of
community partners in guiding all aspects of the research process. One
way in which this imperative has been addressed is through the creation
of community IRBs.
The development of community IRBs actually has its roots in the
failure of academic institutions to adequately protect the rights of
individuals and communities. Indigenous communities in particular have
organized to create structures for insuring that researchers do not gain
access to their members without the explicit agreement of these advisory
boards. One example of this is the thirty-two page Code of Research
Ethics document developed as part of the Kahnawake Schools Diabetes
Prevention Project. This document clearly articulates a set of principles
designed to guide the collaboration between the Kahnawake community
and their academic research partners. The first principle, that “the
Kanien’kehá:ka (Mohawk) and the philosophy of the Kanien’kehá:ka
must be respected”, makes clear the importance of local control and
engagement. This document goes on to define the rights and
responsibilities of both academic and community partners, describes the
process to be used for gaining informed consent, and defines knowledge
translation as “an interactive process that integrates new knowledge
gained from research into practical solutions, tools and/or information
that will improve the overall health and well being of people.”
(Kahnawake Schools Diabetes Prevention Project, 2007).
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On the whole these Citizen Advisory Boards (CAB) provide an
important and effective strategy for shifting the power for reviewing
research proposals to the members of the community in which that
research will be conducted. One potential ethical concern raised by the
creation of such community advisory boards, however, is that the
principle of community sovereignty on which they are based might in
some instances challenge the principle of autonomy of individual
members of those communities. What happens in the instance in which
members of a community wish to participate in a study which has
not been sanctioned by the CAB? In our effort to shift power to
communities, we run the risk of overlooking power dynamics within
these communities themselves which may privilege some while silencing
others. Inequality based on gender, age, class and caste location can all
influence who is allowed to participate in these decision-making
processes and who is excluded. Resolving the ethical tensions created
when our commitment to the principles of autonomy and democratic
practice conflict with respect for community sovereignty and local
control is an ongoing challenge to community-based researchers.
Another issue that has arisen over the past several years and is
becoming ever more pressing is the development of guidelines for the
ethical collection and dissemination of various forms of digital or
electronic data. Here again, a specific example might help to illuminate
the issues involved. Photovoice and digital storytelling are two methods
created specifically by action researchers to facilitate the participation of
community partners, and in particular local youth organizations, in the
research process. Photovoice was first developed by Caroline Wang
(1999) as a strategy for engaging women in rural China as co-researchers
investigating women’s health issues. Since then it has been used in school
and community settings around the world to investigate everything from
community healing in the wake of state-sponsored violence in Guatemala
(Lykes, 2001) to the development of more strategies to re-engage
teachers with at-risk children (Meyer et al., 2004). In general this process
involves giving community researchers cameras and asking them to take
photographs that represent some issue or concern facing their
community. These images are then discussed by the group of community
photographers and the researchers working alongside them, and often
are used to deepen public understanding and to inform policy makers
about the issue.
Ethical concerns arise in terms of what is photographed and how
these images are then used to advocate for change. In some instances
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university IRBs have insisted that these photographs not include
recognizable faces or have claimed that the images constitute research
materials and as such must remain under the control of the universitybased researcher. But this both denies the photographers themselves of
ownership of their work and limits the ways in which the community can
use the images to advocate for change. Instead, we must reconceptualize
data acquisition and ownership to acknowledge the ownership rights of
the individual photographers who grant the academic researcher
temporary access in order to collaborate in the research process and
develop strategies for supporting local community partners in using these
materials to advocate for positive social change.
This relates to the third issue, that we take more seriously the
stipulation that researchers act as responsible members of society who
must take into account the social and environmental impact of their
work. How do we maximize our ability to use our work to foster positive
change in our communities? First, by acknowledging that to date our
strategies for translating the results of scientific research into policies and
programs that address social and environmental issues have been largely
unsuccessful. Presenting our work at academic conferences and
publishing in academic journals where the knowledge generated is
available only to those with access to a closely guarded university library
database are not effective strategies for making our work accessible to
those outside the cloistered world of the university where that knowledge
might actually be used to help create change. The shift toward trying to
create more effective forms of translational science is indicative of a
beginning recognition of this problem. But the structures of publication,
reappointment, promotion and tenure decisions, research funding, as
well as ethical review processes, continue to support systems that limit
access to this knowledge. Open source publishing, sharing knowledge
through electronic media sites like blogs and wikis, creating reports and
presentations with a view toward increased accessibility of information,
are all important steps in making the results of research more broadly
available and useful.
The common theme here is that we can no longer support a system
of knowledge feudalism in which a relatively small number of people
maintain control of the processes and products of knowledge
production. The principles of justice, transparency, respect, and
democratic practice demand a fundamental shift in the way research is
carried out and the knowledge created through the process is made
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available. But at the same time we must remain mindful of the new
ethical challenges that will confront us as we make these changes.
REFERENCES
Brydon-Miller, M., Greenwood, D. & Maguire, P. (2003). Why action
research? Action Research, 1(1), 9-28.
Kahnawake Schools Diabetes Prevention Project (2007). Code of ethics.
Kahnawa:ke Quebec, Canada.
Lykes, M.B. (2001). Activist participatory research and the arts with rural
Mayan women: Interculturality and situated meaning making. In D.
Tolman & M. Brydon-Miller (Eds.), From subjects to subjectivities: A
handbook of interpretive and participatory methods (pp. 183-199). New
York: New York University Press.
Meyer, H., Hamilton, B., Kroeger, S., Stewart, S., and Brydon-Miller, M.
(2004) The unexpected journey: Renewing our commitment to
students through educational action research. Educational Action
Research, 12(4), 557-573.
National Institute of Health (NIH) (2009). Update on the requirement
for instruction in the responsible conduct of research, November
24, 2009. (NOT-OD-1-019). Retrieved October 30, 2010, from
http://grants.nih.gov/grants/guide/notice-files/NOT-OD-10-019.html.
Reason, P. & Bradbury, H. (2001). Introduction: Inquiry and participation
in search of a world worthy of human aspiration. In P. Reason & H.
Bradbury (Eds.), Handbook of action research: Participative inquiry and
practice (pp. 1-14). Thousand Oaks, CA: SAGE Publications.
Wang, C. (1999) “Photovoice: a participatory action research strategy
applied to women’s health” Journal of Women’s Health, 8, pp. 185-192.