Getting Involved in
Ethical Research
TransPride Conference
October 2020
Erricka Hager, MPH
Community Engagement Coordinator
Clinical and Translational Science Institute
University of Pittsburgh
Bee Schindler, LMSW
Community Engagement Coordinator
Clinical and Translational Science Institute
University of Pittsburgh
Doctor of Education Candidate
RaNaja Kennedy, BS
Special Populations Liaison-Disabilities
Clinical and Translational Science Institute
University of Pittsburgh
Setting the stage.
●First, this is meant to be a safe space.
●Second, encourage genuine thoughts and processes. Keep it personal, local and immediate to yourself (i.e. the use of I versus We).
●While a safe space is critical, be mindful that not everyone in the space consented to what you are going to say - be aware of triggers that could impose secondary trauma on people in the room. ●Note your air time. If you are a talker and you know it, wait for three other people in the room to
speak before you raise your hand to speak. If you are not a talker, and want to nudge yourself to be in the conversation (the room needs your voice!), challenge yourself by setting a goal for how many times you’ll speak in the meeting.
●Practice people-first language.
●And to that end, allow for folks to self-identify (speaking of which, my pronoun preference is Bee, they, them - what is yours?)
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Rooting ourselves in Words.
Antiracism: The Center for the Study of Racism, Social Justice & Health at the UCLA Fielding School of Public Health describes
antiracism as an active commitment to dismantle racism, which must be addressed across institutional and societal dimensions as well as behavioral and interpersonal.
Equity & justice as intertwined (Braverman & Gruskin, 2003). Grounded in distributive justice, to which the authors define justice
as fairness, equity is the achievement of an absence of socially unjust disparities (Braverman & Gruskin, 2003).
Equity-Mindedness: The term 'Equity-Mindedness' refers to the perspective or mode of thinking exhibited by practitioners who call
attention to patterns of inequity in student outcomes. These practitioners are willing to take personal and institutional responsibility for the success of their students, and critically reassess their own practices. It also requires that practitioners are race -conscious and aware of the social and historical context of exclusionary practices institutions.
Health Equity: An ongoing process to assure the conditions necessary to achieve optimal health for all people. To achieve health
equity: (1) value all individuals and populations equally, (2) recognize and rectify historical injustices that have led to disproportionate harm on marginalized communities, and provide resources according to population needs.
Structural and Systemic Racism: A system in which public policies, institutional practices, cultural representations, and other
norms work in various, often reinforcing ways to perpetuate racial group inequity. It identifies dimensions of our history and culture that have allowed privileges associated with “whiteness” and disadvantages associated with “color” to endure and adapt over time. Structural racism is not something that a few people or institutions choose to practice. Instead it has been a feature of the social, economic and political systems in which we all exist. In many ways “systemic racism” and “structural racism” are synonymous. If there is a difference between the terms, it can be said to exist in the fact that a structural racism analysis pays more atte ntion to the historical, cultural and social psychological aspects of our currently racialized society.
Leadership
•Liz Miller, MD, PhD
•Esther Bush, President & CEO,
Urban League of Greater Pittsburgh
•Mylynda Massart, MD, PhD
Guiding
Principles
• Empathy
• Equity
• Honesty
• Respect
• Transparency
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5
Past 14 Years: nurturing and sustaining
trust across diverse communities
FUTURE:
Research
Reciprocity,
Research
Receptivity, and
Collaboration
Aim 1: Embed research reciprocity as a guiding core principle for all translational research.
Aim 2: Systematically enhance research receptivity among diverse communities.
Aim 3: Infuse community collaboration in research teams throughout the translational research process from idea to impact.
Aim 3: Infuse community collaboration in research teams
throughout the translational research process, from idea to
impact.
•
Impact-driven research with reciprocity at its core places the inspiration on the
improvement of health of the community to drive research motivation, team
assembly, study design, research conduct, and ultimately, dissemination back to
the community.
Team Assembly Study Design Study Conduct Dissemination and Implementation7
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CPRET: An equity training meant to level the playing field between researchers and community organizations.
To think about:
1. How do activities assume on paper what in real life quickly disrupts?
2. What frameworks/scholars/community leaders should we be including in our thinking and processes
as resources?
3. What are gaps in university-community partnerships that could address power?
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When America Sterilized Women of Color
In 1961, she had been sterilized by the state ofMississippi without her knowledge. She had gone into the hospital to have a small uterine tumor removed – “a knot on my stomach,” she said – when a doctor proceeded to give her a hysterectomy. Mrs. Hamer was in her early forties at the time; she and her husband had adopted two girls. Two earlier pregnancies had ended in stillbirths, but she still hoped to give birth to a child of her own.
“If [the doctor] was going to give that sort of operation, then he should have told me. I would have loved to have children. I went to the doctor who did that to me and I asked him, Why? Why had he done that to me? HE didn’t have to say nothing – and he didn’t.”
CPRET: Community
Participatory Research Ethics Training seeks to encourage reciprocity in community-engaged research in spaces of university-community relationships.
Any researcher engaging in community engaged research can request access to the Community Partnered Research Ethics Training (CPRET), which seeks to break down power and hierarchies within the university-community relationship. WORDOUT grantees are now required to utilize CPRET. This vertical policy was developed within the organization and is implemented and monitored by the institute.
A Policy Instrument to lift up the CTSI policy
Integrate community partners and stakeholders as team members throughout the research process: conceptualization through dissemination. To facilitate
CPRET
Examine how a related institutional policy can disrupt the lack of reciprocity in
research.
Sounds amazing on paper. Wondering about assumptions held that get in the way of making this work equitable and reciprocal...
Q: Where do you work? A: The Clinical and Translational Science Institute at the University
of P ittsburgh
Q : What type of instrument
is this?
A: CP RET is a mandate as
it a rule intended to govern awardees to comply with the training requirement.
Q : Who is the target? And
how is it engaged?
A: CP RET’ s target is
researchers. CTSI staff teach researchers to teach CP RET to community members at the start of their award period.
Q : Why? A: Ethics training should
transfer knowledge and build trust in communities. Researchers gain insight into specific ethical issues of the community for
which they work.
Assumptions: It is assumed that the
training itself holds the capacity to make equitable change. Staff train researchers to facilitate the training on their own, and without doing any modeling, the researcher is made to figure out the many moving pieces. Researchers report that they do not feel comfortable giving a training they didn’t create, and don’t always know the histories presented in the training and feel this creates gaps of knowledge and trust, while also limiting dissemination potential. The training is two hours long and community organizations and researchers might not have the time to fully dedicate to the thinking that could go into the session. The pilot funds are minimal and the planning around this training assumes a willingness to stretch the time and dollars to lift up ethics.
Q : How can we make this more aligned with the policy that seeks
to disrupt the long-held hierarchy of knowledge between the academy and communities by actually integrating? A:Explicitly tie CP RET to reciprocity by recreating the the training, the process, including the addition of a liaison to help guide the facilitation, and include antiracist frameworks to explore ways to disrupt the systems that create ethical concerns in the first place.
Benefits
S ource: Perry, A. (2006): The “behind the veil” mind activity.
BS: The concept of behind the veil discussion is impossible - the bias we carry as folks engaging in a complex society is massive. We cannot posit what it could look like if we wanted to make things better without specifically addressing the system that we would HAVE to acknowledge - ie. not pretend to be behind the veil - to then disrupt.
S ource: Dumas & Anyon (2006), p. 154 “power acting through discourse, shapes the very construction of knowledge.”
BS:Critical to reciprocity, we need to examine CPRET which attempts to disrupt the belief that academia-generated knowledge is better. The author’s refer to Foucault whose work focused on the interpretation of knowledge outside of the knowledge generators - if the interpretation of the data and process differs from the collective body of folks who enacted the process of knowledge translation, than those “outsider” ideas and processes are “irrational or insane.” Scholarly Reflection: Activities seeking reciprocity need to be rooted in systems, and CPRET is not.
-The researcher learns about the community’s ethical concerns, including history -The community learns history of research protection measures and examples of mistrust -If depth around building trust is better integrated into CP RET, the research will ultimately be more relevant, inclusive
-Time as cost: Training + P lanning = 4 hours Compliance cost of CTSI staff: time to train and monitor progress -Compliance cost of researchers & communities: engagement in planning, execution and follow up. -Avoidance costs of CTSI: check in that the training really took place - some don't do the training at all. Others do the training but without depth and CTSI staff work to manage these cases.
Costs
1
2
3
4
5
6
7
Q : Why does it matter if we
integrate community?
A: Lived experiences drive
interpretation of knowledge -be it policy or research data - if systems aren't examined enough, deep enough, and through listening | learning from folks engaging in the systems daily, the effectiveness will be limited to what folks in academia deem to be of interest or relevant.
CPRET: Community
Participatory Research
Ethics Training seeks to
encourage reciprocity in
community-engaged
research in spaces of
university-community
relationships.
1
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This is exciting!
While most in this room have completed CITI training, the time process to move through CITI is time consuming, and not accessible to folks in the community.
Public access to all CPRET training materials are available at
https://ctsi.pitt.edu/education-training/community-partners-research-ethics-training/
University of Pittsburgh (UPitt) Researchers complete CTSI Requests for
consultation and technical assistance with IRB approval process
Complete an in-person meeting with UPitt Researchers and Community
PARTners members
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Examine how a related institutional
policy can disrupt the lack of reciprocity
in research
.Q: Why does it matter if we integrate community?
A: Lived experiences drive interpretation of knowledge - be it policy or research data - if systems aren't examined enough, deep enough, and through listening | learning from folks engaging in the systems daily, the effectiveness will be
limited to what folks in academia deem to be of interest or relevant.
Integrate community partners and
stakeholders as team members
throughout the research process:
conceptualization through
dissemination.
2
A Policy Instrument to lift up
the CTSI policy
3
Any researcher engaging in community engaged research can request access to the Community Partnered Research Ethics Training (CPRET), which seeks to break down power and hierarchies within the university-community relationship. WORDOUT grantees are now required to utilize CPRET. This vertical policy was developed within the organization and is implemented and monitored by the institute. Q: What type of instrument is this? A: CPRET is a mandate as it a rule intended to govern awardees to comply with the trainingrequirement.
Q: Who is the target? And
how is it engaged?
A: CPRET’s target is
researchers. CTSI staff teach researchers to teach
CPRET to community members at the start of their
award period.
Q: Why? A: Ethics training should
transfer knowledge and build trust in communities. Researchers gain insight
into specific ethical issues of the community
for which they work.
19
Assumptions: It is assumed that the training
itself holds the capacity to make equitable change. Staff train researchers to facilitate the
training on their own, and without doing any modeling, the researcher is made to figure out the many moving pieces. Researchers report that they do not feel comfortable giving a training they didn’t create, and don’t always
know the histories presented in the training and feel this creates gaps of knowledge and trust, while also limiting dissemination potential. The training is two hours long and
community organizations and researchers might not have the time to fully dedicate to the
thinking that could go into the session. The pilot funds are minimal and the planning around this training assumes a willingness to
stretch the time and dollars to lift up ethics.
4
Q: How can we make this more aligned with the policy that seeks to
disrupt the long-held hierarchy of knowledge between the academy and communities by actually integrating? A:Explicitly tie CPRET
to reciprocity by recreating the the training, the process, including the addition of a liaison to help guide the facilitation, and include antiracist frameworks to explore ways to disrupt the systems that create ethical concerns in the first
place.
Thomas Jefferson the scientist
“Eager to make his mark, Jefferson
embarked on enthusiastic adventures in
vaccination by gambling with the lives
of his slaves.”
Vaccination was the practice of injecting
cowpox to provide immunity to
smallpox.
Jefferson vaccinated 200 slaves: “Only
after they escaped illness did Jefferson
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Thomas Jefferson the scientist
“The vaccinated persons remained
well and the unvaccinated ones fell
ill, but this did not convince
Jefferson’s scientific peers, so
Jefferson had a vaccinated slave
injected with live smallpox
material.”
Harriet A. Washington (2006) Medical Apartheid.
Scientific Racism
Samuel L. Cartwright MD 1848
The Diseases and Peculiarities of the Negro Race
•
Belief that diseases manifested differently in Blacks
•
Blacks do not feel pain, anxiety
•
Drapetomania from the Greek for flight and insanity
•
Black Iatrophobia – fear of medicine
The Father of Modern Gynecology
James Marion Sims
•
Vesicovaginal fistula as the result of
difficult childbirth
•
Debilitating, emotionally and socially,
leading to permanent invalidism
•
Developing a surgical cure would make
Sims’ career
•
Acquired 10 enslaved women who were
suffering from vesicovaginal fistula
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The Father of Modern Gynecology
Inhalation of ether as anesthesia known since 1840
Sims claimed his experimental surgical procedures were
“not painful enough to justify the trouble and risk attending
the administration.”
However, from his memoirs: “Lucy’s agony was extreme…
she was much prostrated and I thought she was going to
die.”
Anesthesia was always administered when Sims performed
the surgery on white patients.
Benefits
5
-The researcher learns about the community’s ethical concerns, including
history -The community learns history of research protection measures and
examples of mistrust -If depth around building trust is better integrated into CPRET, the research will
ultimately be more relevant, inclusive
Costs
6
-Time as cost: Training + Planning = 4
hours
Compliance cost of CTSI staff: time to train and monitor progress -Compliance cost of researchers & communities: engagement in planning,
execution and follow up. -Avoidance costs of CTSI: check in that the training really took place - some don't do the training at all. Others do the training but without depth and CTSI staff
work to manage these cases.
Scholarly Reflection: Activities seeking reciprocity
need to be rooted in systems, and CPRET is not.
Source: Perry, A. (2006): The “behind the veil” mind activity.
The concept of behind the veil discussion is impossible - the bias we carry as folks engaging in a complex society is massive. We cannot posit what it could look like if we wanted to make things better without specifically addressing the system that we would HAVE to acknowledge - ie. not pretend to be behind the veil - to then disrupt.
Source: Dumas & Anyon (2006), p. 154 “power acting through discourse, shapes the very construction of knowledge.”
Critical to reciprocity, we need to examine CPRET which attempts to disrupt the belief that academia-generated knowledge is better. The author’s refer to Foucault whose work focused on the interpretation of knowledge outside of the knowledge generators - if the interpretation of
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Thank you for being in the space.
Do you have questions or comments to share?
Looking to connect? Email us at: [email protected] [email protected] [email protected]
