Challenges and Resilience in COVID-19 Research Ethics at UNMC
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UNMC, September 2023
Gianna McMillan, D. Bioethics, MFA
Bioethics Institute at Loyola Marymount University
•
My experience with narrative
•
IRB stories about COVID Research
•
Analysis and reflection
Categories of Health Narratives
Narrative Inquiry in Bioethics
https://nibjournal.org/voices/resea
rch-on-covid19/
Personal stories about health care
issues and commentaries by experts
in relevant fields that discuss
bioethical themes woven throughout
the collection.
Walter Dehority – IRB Chair
“…panicked physicians,
patients and media outlets
turned to the research
community for answers –
desperately hoping for cures,
vaccines, and preventative
measures…”
“… a drowning person will
reach for any lifeline thrown
their way, whether or not that
line is secure.”
Edith Paal – IRB Director
Our standard practice, when emergencies hit, is to allow
ourselves about 8 seconds to panic. Then, once that is out of our
system, we settle into work. …COVID, we now know, merited a bit
more than 8 seconds of panic…”
Stefanie Juell – Assoc. Director of IRB Education and Compliance
“…staff members were on the verge of tears…some even
considered quitting because these(mostly women) truly felt their
lives were at stake because they were physically present in the
office.”
Gabrielle Rebillard – HRPP Director
“
I got pulled into countless meetings about closing
the University on a temporary and then semi-
permanent basis. This morphed into committees and
sub-committees about “ramping down” and
“ramping up” research.
Walter Dehority
“We wanted to
act
… but did the medical
community
really
need 104 national
trials of hydroxychloroquine that April
(all presumably IRB approved, two from
our institution), many of which were
single-site, underpowered, or
uncontrolled studies?”
Sara Griffin – IRB Manager
Most of the dilemmas I faced while
reviewing COVID-related studies was
the seemingly endless overlapping of
research.”
Hallie Kassan – HSP Director
“We needed time rapid turnaround… The struggle was
giving IRB members enough time to perform an
adequate review.”
Jennifer Randles - IRB Chair
“The pandemic reinforced deeply
entrenched research inequalities… but
also presents an opportunity to
consider the benefits, risks and trade-
offs of virtual data collection.”
“Respect for personhood, beneficence,
and justice are collective promises that
reflect our core humanity.”
“COIVID … required researchers to
reassess the unique physical,
psychosocial, emotional, social, and
identity risks to human subjects… these
risks were and are still largely unknown.
Stefanie Juell
“…I could not allow myself to
succumb to the pressure of
desperation I had to stick to
what I knew…”
“Adhere to principles that
have always been a guide for
your work.”
Gigi McMillan
“… this ‘new situation’ does not mean we need ‘new
rules.’ The old rules—our existing tradition of ethical
research practice—are still valid … The answer is not to
invent new strategies, but to wield, with confidence,
the tools that have already stood us good stead.”
Narrative Analysis
Characters
Plot
Setting
Resolutions
Conflict
“To whom did I owe
my loyalty?”
“I wept as my students
and I discussed the
suffering that would
likely ensue…”
“We created a running
list of pandemic
research FAQs…”
“Our conference
rooms had been
turned into
hospital rooms…”
Board members-
IRB staff-the media-
patients-Institutional
Officials-investigators-the
public-our families
Contagious
virus-public panic-the
need for vaccine-minimal
data-challenges balancing
ethical practice with
compelling need
•
Analyze
•
Consider
•
Discuss
•
Feel
•
Reflect
•
Share
•
Appreciate
•
Envision
•
Plan
Protagonists
HEROES
We use the cognitive and emotional components of story
to process events and make nuanced plans.
Reflecting on the personal narratives of IRB professionals at UNMC during the COVID-19 pandemic reveals the intense challenges faced in balancing urgency with ethical research standards. Stories of panic, pressure, overlapping studies, and rapid turnaround shed light on the complexities of navigating research ethics in times of crisis.
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Presentation Transcript
Personal Narrative and Personal Narrative and Research Ethics Research Ethics UNMC, September 2023 Gianna McMillan, D. Bioethics, MFA Bioethics Institute at Loyola Marymount University
My experience with narrative IRB stories about COVID Research Analysis and reflection
Narrative Inquiry in Bioethics Personal stories about health care issues and commentaries by experts in relevant fields that discuss bioethical themes woven throughout the collection. https://nibjournal.org/voices/resea rch-on-covid19/
Edith Paal IRB Director Our standard practice, when emergencies hit, is to allow ourselves about 8 seconds to panic. Then, once that is out of our system, we settle into work. COVID, we now know, merited a bit more than 8 seconds of panic Walter Dehority IRB Chair panicked physicians, patients and media outlets turned to the research community for answers desperately hoping for cures, vaccines, and preventative measures Stefanie Juell Assoc. Director of IRB Education and Compliance staff members were on the verge of tears some even considered quitting because these(mostly women) truly felt their lives were at stake because they were physically present in the office. a drowning person will reach for any lifeline thrown their way, whether or not that line is secure.
Gabrielle Rebillard HRPP Director I got pulled into countless meetings about closing the University on a temporary and then semi- permanent basis. This morphed into committees and sub-committees about ramping down and ramping up research. Walter Dehority We wanted to act but did the medical community really need 104 national trials of hydroxychloroquine that April (all presumably IRB approved, two from our institution), many of which were single-site, underpowered, or uncontrolled studies? Sara Griffin IRB Manager Most of the dilemmas I faced while reviewing COVID-related studies was the seemingly endless overlapping of research. Hallie Kassan HSP Director We needed time rapid turnaround The struggle was giving IRB members enough time to perform an adequate review.
Jennifer Randles - IRB Chair The pandemic reinforced deeply entrenched research inequalities but also presents an opportunity to consider the benefits, risks and trade- offs of virtual data collection. Stefanie Juell I could not allow myself to succumb to the pressure of desperation I had to stick to what I knew Respect for personhood, beneficence, and justice are collective promises that reflect our core humanity. Adhere to principles that have always been a guide for your work. COIVID required researchers to reassess the unique physical, psychosocial, emotional, social, and identity risks to human subjects these risks were and are still largely unknown. Gigi McMillan this new situation does not mean we need new rules. The old rules our existing tradition of ethical research practice are still valid The answer is not to invent new strategies, but to wield, with confidence, the tools that have already stood us good stead.
Narrative Analysis Setting Conflict We created a running list of pandemic research FAQs Resolutions
Analyze Consider Discuss Feel Reflect Share Appreciate Envision Plan Protagonists HEROES
We use the cognitive and emotional components of story to process events and make nuanced plans.
