The IRB and participatory research

This evening I finally completed my “IRB” (Institutional Review Board) application which specifies how I will be protecting my human “subjects” from potential harm for my proposed research project. Ostensibly, this is a very good process to undergo because, in the past, researchers have abused and manipulated people under the guise of “scientific” research. The most egregious forms of abuse have happened in the field of medicine, such as when the U.S. Public Health Service purposefully withheld treating African American men for syphilis between 1932 and 1972, which was clearly unethical and resulted in the prolonged sickness and death of innocent human beings. The “Tuskegee syphilis experiment” helped lead to the 1979 Belmont Report, which required that all federally-funded research must be vetted by an “institutional review board” to make sure human subjects are protected from harm. Not all maltreatment of people was for the purposes of medicine, however. In 1971, the Stanford prison experiment was a psychological experiment designed to see what would happen when students played the role of prisoners and prison guards. The experiment started innocently enough, but after a short period of time, the “guards” started psychologically and physically abusing the “prisoners”. The experiment should have been stopped after this abuse began, but the researcher allowed it to continue for several days. Similarly, the “Tearoom trade” was an ethnographic study of gay men published in 1970 that used extreme deception to achieve its aims, potentially damaging people’s lives and families.

All of this background is to say that any social science researcher, such as myself, is obligated both by history and by regulations to consider how a research protocol could potentially harm people who participate in a study. For most social science research, there is a minimal potential of harm that can often be mitigated by assuring people’s participation in studies is confidential and that no personal identifiers are attached to raw data. Luckily for my particular study, I am not proposing to include people in certain protected classes (e.g., children, prisoners) and the nature of the study makes it unlikely that simply participating in the study could result in more than minimal harm to people. (A good example of this potential of more than minimal harm is a study that would involve interviewing people who are doing illegal activities.)

One issue I have with the IRB process is the assumption of positivistic science protocols that assume that there is a definite “researcher” and “subject”. In participatory research, for instance, everyone involved in the study becomes a co-researcher, severely blurring the lines between who is the researcher and the subject. Participatory research can result in a greater level of protection of participants because these individuals participate as equals with the principal investigator in selecting research methods; the participants are therefore fully aware of potential harm and can therefore choose to not engage in activities that may cause this harm. IRB instructions and guidelines, however, usually do not consider participatory research and its perspective of community empowerment and justice that contributes to protecting “subjects” from harm.

Participatory research can be defined as a community that researches itself in a process facilitated by a researcher (or principal investigator). In traditional social science methodologies the researcher and the subject are clearly and permanently delineated, even in those methodologies (such as ethnographies) that seek an emic or insider’s perspective. In participatory research, it is not possible to make this distinction because of the fluidity of the roles that community members play in the process. Louise Fortman (2008, p. 2) refers to participatory research as “interdependent science” because some “questions are best answered in collaboration.”

Interdependent science is defined by “local knowledge” or “situated knowledge” by “civil” experts as opposed to “conventional” experts who are defined, in part, by their use of scientific knowledge (Fortman 2008, pp. 2-4, 8). Participatory research therefore embodies a kind of epistemological agnosticism, readily accepting any form of knowledge as long as it is defined and accepted by community participants. Bendremer and Thomas (2008, p. 65) emphasize respect for this epistemological flexibility, directing conventional experts to “stop privileging academic inquiry and assign equal standing to Indigenous belief systems, decision-making bodies, and sensibilities.” Fortman (2008, p. 6) refers to the academy’s preference for conventional experts’ scientific knowledge as an “epistemic injustice” because all people have the potential to be “credible knowers” regardless of their education or social status.

Conventional experts, however, can be full participants in participatory research, performing as equals with their community members. The conventional expert, however, does not control the process and seeks to equalize any power structures. In this frame, the expert serves as a facilitator of the overall process, providing input and suggestions, when appropriate, but deferring to the community members in terms of decision-making endeavors. In addition, sometimes experts train community members on how to perform certain research methodologies. Bergelin et al. (2008, p. 146-161) offer the advice that conventional experts should listen carefully and not be “controlling” and strive to be “open and humble, persistent and strong.” This hands-off approach, as Arora-Jonsson et al. (2008, p. 246) emphasize, manifests as “local people [being] treated, not as data sources, but as colleagues in producing new knowledge.”

While there are a number of different flavors of participatory research, they all focus on issues of social justice and social action. The premise is that through research, communities are empowered to identify problems and create and implement possible solutions. In this sense, participatory research has much in common with participatory democracy by maximizing the opportunity for a community to make its own decisions.  This process, as Timothy Pyrch (2012, p. xiv) advocates, “opens up the world of knowledge-making to people long silenced by forces intent on controlling knowledge for the educated elite.” This characteristic is one reason why participatory researchers typically work with disempowered communities in developing countries, but it can and has been applied to a wide variety of cultures in Western as well as non-Western contexts.

Kemmis and McTaggart (2005), who are often cited in the literature, define a model for participatory research that employs an overall cycle of planning for change, acting on the change, and reflecting on the action, which then repeats:

  1. Planning a change
  2. Acting and observing the process and consequences of the change
  3. Reflecting on these processes and consequences
  4. Replanning
  5. Acting and observing again
  6. Reflecting again, and [repeating the process].

Per the theoretical assumptions of participatory research, the co-researchers (i.e., the participants) in a study are free to define the methods that they will use to collect and analyze data. These possible methods might include interviews, journaling, participant and non-participant observation, photo elicitation, and even artistic expression (e.g., dance, painting/drawing, music). For my work in community-based participatory research, I found that the iterative framework of “participatory evaluation in community initiatives” presented by Fawcett et al. (2003) to be particularly useful. It consists of the following steps that are repeated until the participants achieve satisfaction:

  1. Naming and framing the problem/goal
  2. Developing a logic model for achieving success
  3. Identifying research questions and methods
  4. Documenting the intervention and its effects
  5. Making sense of the data
  6. Using information to celebrate and make adjustments

The use of this framework assumes that knowledge is co-produced by all participants (including the conventional experts) in the process.

So, perhaps one day the IRB process will accommodate the perspectives of participatory research, but until then, those of us who use this methodology are burdened by the need to make extra justifications that this technique actually helps to protect participants from harm rather than increase it. We need to recognize that in some cases, removing the firewall between the researcher and the subject can result in significant benefits to everyone involved in a study.

References:

Arora-Jonsson S. et al. (2008). Conclusions. In Participatory research in conservation and rural livelihoods: Doing science together, L. Fortmann (Ed.), pp. 245- 265. Blackwell Publishing.

Bendremer, J.C., Thomas, E.L. (2008). The tribe and the trowel: An indigenous archaeology and the Mohegan archaeological field school. In Collaborating at the trowel’s edge: teaching and learning in indigenous archaeology, S.W. Silliman (Ed.), pp. 50-66. University of Arizona Press.

Bergelin Å, Emretsson M., Halvarsson A.L., Halvarsson E., Ryen A. (2008). Where peace comes dropping slow: The forests and nature for us. In Participatory research in conservation and rural livelihoods: Doing science together, L. Fortmann (Ed.), pp. 146-161. Blackwell Publishing.

Fawcett, S. B. et al. (2003). Building capacity for participatory evaluation within community initiatives. Journal of Prevention & Intervention in the Community, 26 (2), 21-36.

Fortman, L. (2008). Doing science together. In Participatory research in conservation and rural livelihoods: Doing science together, L. Fortmann (Ed.), pp. 1- 17. Blackwell Publishing.

Kemmis S., McTaggart R. (2005). Participatory action research: Communicative action and the public sphere. In The Sage handbook of qualitative research (third edition), N.K. Denison and Y.S. Lincoln (Eds.), pp. 559-604. Sage Publications.

Pyrch T. (2012). Breaking free: A facilitator’s guide to participatory action research practice. Lulu.

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