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11/10/13 U. Mass Boston PAR Institute Ethics Presentation

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Monique Guishard

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Transcript of 11/10/13 U. Mass Boston PAR Institute Ethics Presentation

U. Massachusetts Boston PAR Institute
November 10th, 2013

Ethics and Participatory Action Research:
Rhetoric vs. PAR-ticula-Realities....

Institutional review boards (IRBs) are administrative committees that are tasked with reviewing, requiring revisions, and approving research protocols involving “human subjects” that are federally funded.
IRB panels are mandated (by the U.S. Department of Health and Human Services) to oversee research with human participants under the National Research Act of 1974.
IRBs were created in response to public exposure to instances of outrageous abuse of human subjects such as the Tuskegee Syphilis Study (1932-1972) and Nazi experiments.
Committees are comprised of at least five members. Most members are scientists from different disciplines and at least one member must be a “nonscientist”, unaffiliated with the host institution. New research by Robert Klitzman (2012) questions what & whom community IRB members represent and how dis-empowered many of them feel during the review process.
“The IRB’s job is to protect research participants by a) making sure that the research is valid, b) ensuring that the risks are minimized or balanced by benefits or potential benefits, and (c) ensuring that potential participants are given information relevant to making an informed decision about participating in the research and about the choices involved in doing so." (pg. 124)

Institutional Review Boards perform an important task within institutions, but they are primarily concerned with protecting the institution from claims of abuse– thus, robust considerations of ethics of research are elided if we mistakenly think of the IRB process as the end-all be-all of ethics.
... a VERY small part
The IRB process is just a small part of what social scientists must consider in conducting ethical research.
An example of what isn’t included in the IRB process … From the Introduction to a Statement on Research on Indigenous Land*
(*Many would argue that all land is indigenous land)

Tuck and Villegas (in progress):
“What follows is a series of recommendations for ethical and responsible research on indigenous land. We have framed these recommendations in terms of research on indigenous land to include not only research on and with indigenous communities, but also on indigenous human remains and human tissue; our sacred places, flora, and fauna; our stories, histories, literature and art; our knowledge and knowledge systems; and data, including test scores, graduation rates, birth and mortality rates, employment rates, and other life outcomes. The guidelines apply to evaluations of institutions, programs, and curricula.

“We appreciate that much of research is currently divided between research involving human subjects, and research that does not involve human subjects. Our guidelines apply to both sides of this divide because we contend that it is a false divide. This divide does not apply to how we understand the relationships between people, flora, fauna, and place. They emerge from a belief in the power of life in all its forms; and a recognition that human concerns and benefits must be balanced with

the concerns & benefits of other life.”
As you all have no doubt been learning this weekend participatory action research is counter-hegemonic to the agenda of mainstream research.
Participatory Action Research Problematizes Mainstream (Research) Notions of:
The knowledge production process:
Distance required between “knower” and “known” to achieve “objectivity”
The passive un-insightful participant
The powerful, unbiased, and value free erudite researcher
Publications and Presentations
The purpose of Research
Research for what? And for whom? With what unit of analysis?
Generalizable Findings
With Norman Denzin, we contend, “Ethics are pedagogies of practice.
IRBs are institutional apparatuses that regulate a particular form of ethical conduct, a form that may be no longer workable in a transdiciplinary, global and postcolonial world.” (Denzin, 2008, p. 1)
If contemplation about the ethics of a project
by a novice or expert researcher is only concerned about
getting the project approved by an IRB, many important
considerations are overlooked.
Drink this to Cure All Ethical Issues!
Many people perceive Participatory
Action Research as a CURE for overcoming historical abuses of oppressed people in biomedical and behavioral research...
Cahill, Sultana & Pain, (2007):
“PAR does not circumvent ethical dilemmas. Indeed it raises new dilemmas, and these often collide with institutional ethics procedures in especially problematic ways.” (pg 305-306)
Participatory Orientations to Research
Are NOT Panaceas

One of the most distinctive and compelling qualities of PAR is that— by nature of being collaborative, even intimate— it exposes ethical worries that are latent in all social science research.  Concerns of respect, compensation, representation, interpretation, relevance, fairness, and accuracy burst to the forefront in PAR, and can yield insights for other methodologies of educational and social psychological research in which negotiations of these concerns may be less transparent.
Maracek, Fine, & Kidder (1997) p. 641:
“...Who owns the data?” is an ethical question that participants in laboratory studies do not think to ask. Whose interpretation counts? Who has veto power? What will happen to the relationships that were formed in the field?”
“What are the researcher’s obligations after the data are collected? Can the data be used against the participants? Will the data be used on their behalf? Do researchers have an obligation to protect the communities and social groups they study or just to guard the rights of individuals? These kinds of questions reveal how much ethical terrain is uncharted by official guidelines, such as those of the American Psychological Association or of IRB reviews.”

About the stance of researchers and participants
About theories of change

Complicates prior notions of expertise
Embraces Humility

Proactive with respect to ethical quandaries and not exclusively reactive.
Plans for multiple entries and exits

Preserves dignity
Takes seriously the notion of the sacred
Respectful of self-definitions & sovereignty

Attentive to Action
Locates action and sustainability as primary and
not tertiary or forgotten goals of collaborative research

Focused on Relationships
Contact zones
Strives to maintain transparency in collaboration
Ethical participatory action research is:
Tip of Ethical Considerations
Federal Mandates & IRB Regulations
Malone, Yerger, McGruder, & Froelicher, 2006
Protecting the Hood Against Tobacco Project
The Havasupai People vs. Arizona State University Settlement, 2010
Persistent distrust among African Americans about academic Research
Henrietta Lacks, HeLa cell line
Some Concrete Examples of Clashes between institutional ethics and Relational Ethics
Head, Heart, Hands, & Feet Shareback Instructions
More examples from Colleagues…
Sarah Zeller-Berkman’s contracts with youth co-researchers
An example of reciprocity from Greg Dimitriadis’ ethnographies with urban youth
Examples of approaches to co-authoring
Monique: An Example of how IRBs hinder PAR research is Malone, R.E., Yerger, V.B., McGruder, C. & Froelicher, E. (2006).
AS part of their Protecting the ‘Hood Against Tobacco (PHAT) project researchers from the University of California, San Francisco conducted focus groups with community members in order to understand and document their reaction to tobacco industry advertising activities targeting residents of color in “2 geographically contiguous and predominantly African American neighborhoods in San Francisco. (pg. 1915).”
Residents who participated were deeply affected by their participation in the focus groups, particularly the insight into the racist advertising strategies, and many participants wanted to share this information and “consider smoking cessation.” A partnership was established wherein some residents agreed to serve as community researchers to investigate tobacco caused harm in their backyards.
The community partners were instrumental in co-designing the study and facilitating a town hall meeting where information about “tobacco's disproportionate effects on African Americans” was disseminated and a survey of the community’s perception of resources available to aid smoking cessation and impediments to quitting was conducted.
The data revealed that the sale of loosies; single cigarettes sold unbeknownst to residents illegally in bodegas and liquor stores was a major obstacle to quitting.
This knowledge energized the community researchers who, “decided to conduct a systematic assessment of
the proportion of convenience stores in the
community that sold single cigarettes in 'violation
of state law”
“Some stores were in areas where loitering could be dangerous, and sometimes there was a long time between sales. They argued that it was impractical to wait around to watch for single cigarette sales. Instead, they wanted to make a single-cigarette purchase attempt and document the result for each store (pg. 1916).”
A modified proposal was submitted, which specified that identifying information would not be collected about the stores, employees, or business owners. It also specified that results would be presented aggregately. The IRB rejected the proposal admonishing the PHAT proposed research design as one that would “entrap” store owners to commit an illegal act that they “could not approve any university involvement in illegal activity."
The Usual Suspects
What's Typically Defined as Ethical in Research...
Monique Guishard
ABD Critical Social-Personality Psychology Ph.D Candidate
The CUNY Graduate Center
Lecturer of Psychology,
Bronx Community College, CUNY

What does it mean to be Ethical in research with human participants?
Strohm-Kitchener, K. & Kitchener, R.F. ( 2009). Social science research ethics:
Historical and philosophical issues. In Donna M. Mertens and Pauline E. Ginsberg
(Eds.). Handbook Of Social Research Ethics (pp. 1-22). Beverly Hills: Sage
Ethical rules from discipline specific professional codes of conduct
Knowledge of & observance of federal and international regulations which guide research with human subjects
Adherence to ethical principles:
BENEFICENCE (do GOOD, no harm, maximize benefits & minimize harm),
RESPECT for PERSONS (autonomy & informed consent),
JUSTICE (benefits & risks of individual study participation should be equitably distributed).
The Nuremberg Code 1947;
The Helsinki Report 1964; 2013*
The Belmont Report 1979;
45 CFR 46, "The Common Rule" Revised: 1991, 2005, 2009, and an Advance Notice of Proposed Rulemaking to Revise 45 CFR 46 was issued on 7/22/11

Speiglman, R. & Spear, P. (2009). The role of institutional review boards:
Ethics now see them, now you don’t. In Donna M. Mertens and
Pauline E. Ginsberg (Eds.). Handbook Of Social Research Ethics (pp. 121-134). Beverly Hills: Sage Publications.
Institutional Review Boards (IRBs) are undeniably staffed by dedicated people who care about the ethical conduct of research and the well-being of human participants in research.
IRBs also work to ensure the language of informed consent is understandable and that decisions regarding participation are un-coerced. IRB members are highly trained to work with academic researchers to refine research protocols that protect human participants in research from particular forms of abuse.
Research however is narrowly defined in the federal guidelines that direct the activities of the IRB as:

Ethical review bodies such as IRBs are viewed by many as reactive and partial rather than proactive and holistic; representing a system of checks without attempts at balancing or even disrupting unequal and exploitative relationships in scientific inquiry.
are NOT enough
There is a common misconception that PARTICIPATORY approaches to research are merely additional methods of social research. This perspective of/on participatory research misinterprets the "P" in PAR or CBPR; it assumes that participation is just about including more people in research, particularly people who have usually been the subjects of research.
This (mis)understanding of PAR does not acknowledge that participation refers to a set of beliefs about knowing and knowledge. This misconception does not take into account that collaborative research has inherent ethical positions around what research is used for, with whom and by whom is research conducted, and ethics about changing exploitative relationships between scientists and communities that have historically existed in other approaches to research.
A fundamental conflict exists between competing values:
A belief in value neutral and free scientific inquiry and pursuit of findings, discovery, and classification.
Epistemological and methodological commitments to research for social justice which attends unremittingly to critical reflexivity, voice, authority, dignity, respect, and self determination
Dear PAR,
This Perspective..
My Dissertation...
My Research also...
The primary purpose of my proposed study is to: explore what it means to be ethical in community based and participatory research with human subjects’ from the perspective of different stakeholders . It is my position that academic scientists and community based entities, folks who embrace a collaborative ethos toward research, possess a distinct perspective on evaluating ethical conduct in research by virtue of the threshold spaces PAR produces...

if analyzed can be highly informative in addressing ethical concerns about ownership of data, interpretation of results, self-determination of participants, rights, researchers' responsibilities, and social justice that are present in all scientific inquiry
Aims to illuminate the fracture points between Institutional Review Board centered ethics and de-colonial ethics by examining ethical training materials for their inherent assumptions alongside relational ethical thinking and practices espoused by community based researchers, participatory researchers & their community partners.
Monique's Dissertation
In research discourse about what it means to be ethical is usually contained in:
Graduate research ethics courses
Modular, computerized ethical trainings,
The Institutional Review Board (IRB) submission process.
“A living individual about whom an investigator conducting research obtains Data through intervention or interaction with an individual , or identifiable private information.
45 CFR 46.102(f)

Thinking about our juicy conversations yesterday...
It also occurred to me that there are also tensions about norms of Participation and Interaction!
Examples from my dissertation....
Full transcript