Laura Stam has recently become a contributing writer for Synapsis: A Heath Humanities Journal. Her first piece takes a look at the film The Miseducation of Cameron Post which is set in 1993 and reminds audiences of the continued importance of fighting for LGBTQ+ rights.
Health Humanities & Bioethics Attend ASBH Annual Conference
The Department of Health Humanities & Bioethics attend the American Society of Bioethics & Humanities annual conference in October. Many members of our department presented at this years conference:
"Quantitative Bioethics: The Promise and Challenges of Using Advanced Quantitative Methods in Empirical Bioethics" – Jon Herington
"Exploring Moral Distress in Medical Education: Ontological Ambiguity and Cadaveric Dissection" – Erik Larsen, Margie Shaw, Christopher Mooney, & Natercia Rodrigues
"A Sinking Feeling: a Readers’ Theater Performance on Medical Malpractice" – Ramya Sampath & David Kaufman
"A Call to Tarry: A Journey Away from Turfing" – Patricia Luck & Arman Niknafs
"Dismantling the Museum: Protest and Reimagining Public Spaces at a Medical Center" – Wendy Gonaver, Adrienne Morgan & Margie Shaw
Check out our pictures from this great event.
Jonathan Herington, PhD, was a member of the AI Task Force of the Society for Nuclear Medicine and Medical Imaging, which laid out recommendations on how to ethically develop and use AI medical devices in two papers published in the Journal of Nuclear Medicine. In short, the task force called for increased transparency about the accuracy and limits of AI and outlined ways to ensure all people have access to AI medical devices that work for them—regardless of their race, ethnicity, gender, or wealth.
An internationally renowned bioethicist who is building a bold new department at the University of Rochester Medical Center, Ross has been elected to the National Academy of Medicine (NAM), an organization comprised of the best of the best in American health care and academic medicine.
Published in Pediatrics, the recommendations pivot from the age-old mindset of doing what is in the "best interest of the child" to promoting the "child's interests"—a change that acknowledges that multiple factors—medical and otherwise—influence a child's well-being. They also advise physicians to give parents wide decision-making latitude. Ross, chair of Health Humanities and Bioethics, worked with other medical and ethics experts to conceive the recommendations.
Dr. Jon Herington, Health Humanities and Bioethics Faculty Awarded CTSA UL1 Grant
Dr. Jon Herington & other members of the Health Humanities and Bioethics faculty were recently awards a NIH CTSA UL1 grant, “Capacity Building in Bioethics for Scientists across the Translational Spectrum.”
The overall goal of this project is to build capacity in translational ethics, by investigating the ethical questions that arise during research projects that translate basic scientific findings into clinical or population health interventions. It will result in a series of educational modules designed to raise awareness and build the ethical competency of emerging translational researchers as they work to responsibly generate knowledge and interventions that benefit patients and communities.
Congratulations to all!
Read more at the UR CTSI Stories Blog page
Dr. Patricia Luck Presents at University of Hong Kong About Shame & Stigma in Medical Education
Dr. Patricia Luck recently traveled to the University of Hong Kong as an invited speaker to their Medical Ethics and Humanities Unit. The title of the presentation was “Shame and Stigma in Medical Education: Through the Lens of the Health Humanities.”
During her visit, Dr. Luck discussed the shame and stigma in medication education alongside Hong Kong University faculty members and MBBS students. They shared their valuable views from the perspectives of healthcare professionals/educators, psychologists/student counsellors, and students as well as their views on medical education in general.
To quote the HKU Medical Ethics & Humanities Unit, “Let us work collaboratively to create a more compassionate and empathetic learning environment for our students, thereby enabling them to become humanistic physicians who prioritize the human aspect of healthcare.”
Dr. Lainie Ross Quotes in Recent Nature Article
Dr. Lainie Ross was recently quoted in an article in the journal Nature titled, “The Battle Over How to Redefine Death” by Max Kozlov. In the article, Kozlov talks about the differences in ideology that threaten US efforts to harmonize the definition of brain death across the country.
You can read the full article here.
Netflix’s hit Take Care of Maya scratches the surface of a huge problem
Mical Raz, the Charles E. and Dale L. Phelps Professor in Public Health and Policy, and a professor of history and of clinical medicine, discusses the Netflix documentary Take Care of Maya, which follows the plight of a family facing an accusation of child abuse. You can read the full article here.
Year-Out Student Sabrina Jamileh Sayegh Presents Pathway Project Proposal
Year-Out medical student Sabrina Jamileh Sayegh presented their Health Humanities & Bioethics Pathway project proposal “Capturing the ‘Invisible’: Using Photovoice of Queer and Transgender Identity with middle Eastern/North African Ethnicity.”
Literature on the lived experiences of queer and transgender (QT) Middle Eastern and North African (MENA) Americans is very limited. Within the small amount of literature that Sabrina has found, queer transgender American’s have higher rates of mental health disorders and suicide rates. MENA Americans struggle with denial of and the stigma around their health needs and queer MENA people have unique experiences developing their identities. Sabrina’s study seeks to explore this identity intersection using the Photovoice method.
For this year-long study, Sabrina hopes to achieve the following objectives:
- Assist in building and participating in a community of QT MENA Americans brought together through this project
- Understand how the intersection of QT identity and MENA ethnicity influences one’s interactions with self, community, and healthcare institutions
- Explore the strengths and resilience associated with this identity intersection
- Provide insight into this community’s experiences and needs
- Create a physical, interactive exhibit of community members’ photographs and stories
We cannot wait to see the results of this study!
Good work Sabrina!
Dr. Lainie Ross Presents at University of Zurich’s Caring for the Orphans Conference
Dr. Lainie Ross gave a presentation at the University of Zurich on Thursday, June 15th as part of the Caring for the Orphans: Ethical Issues in the Context of Rare Diseases conference. Her talk was titled, “Thinking zebras not horses when the herd runs past: Atypical Diabetes Mellitus.”
This conference brought together scholars from diverse fields such as medical ethics, philosophy, medicine, and the social sciences to address the complex issues regarding rare diseases in children. The primary objective of this conference was to foster discourse on the ethical, legal, and social implications of rare diseases. The conference is part of the University Research Priority Program (URPP) ITINERARE (Innovative Therapies in Rare Diseases) at the University of Zurich.
Dr. Ross’s talk can be viewed here.
Dr. Ross named Dean’s Professor of Health Humanities & Bioethics
On May 17th, 2023, Dr. Lainie Ross received the Dean’s Professor of Health Humanities & Bioethics professorship at the 2023 School of Medicine Faculty Awards.
For a complete list of award recipients, click here.
Dr. Ross Presents at CHOP Pediatric Grand Rounds
Dr. Lainie Ross, chair of the Department of Health Humanities & Bioethics, was invited to present at the Children’s Hospital of Philadelphia Pediatric Grand Rounds on May 17, 2023. The title of her talk was “Intellectual Disability and Organ Transplantation: An ethical analysis.”
You can watch the recording of her talk here.
Dr. Ross Quoted in Recent Article
Dr. Lainie Ross, chair of the Department of Health Humanities & Bioethics, was quoted in the May 2023 edition of Medical Ethics Advisor in the article “Living Donor Liver Transplant Raises Multiple Ethical Questions” You can read the full article here.
Lainie Friedman Ross Receives Honorary Doctorate of Humanities
On May 12, 2023, during the commencement ceremony at Oakland University in Rochester, Michigan, Lanie Friedman Ross, MD, PhD, will receive an honorary Doctor of Humanities degree for her exemplary scholarship and leadership in bioethics. Ross recently joined URMC as the inaugural Chair of Health Humanities and Bioethics and serves as director of the Paul M. Schyve, MD Center for Bioethics.
At Oakland University, the William Beaumont School of Medicine is a relatively new institution, established in July 2008. Ross’s nomination comes during the creation of their first Center for Moral Values and Medicine. Three bioethicists at the university recommended her for this honor, stating that she is “arguably the most influential, accomplished, and important pediatric ethicist of our time.”
Ross’s core areas of expertise include ethical and policy issues in pediatrics, clinical decision making, death and organ transplantation, genetics/genomics, clinical research ethics, and human subject protections. She has published five books, over 225 peer-reviewed journal articles and book chapters, and is currently writing a sixth book examining ethical issues related to siblings in health care.
“I’m thrilled to receive this honorary Doctor of Humanities degree,” said Ross. “It is a validation of the importance of bioethics in academic medicine and the training of the next generation of clinicians in both the art and science of medicine.”
Dr. Jon Herington Presents at the Bioethics Noon Conference Series
On Wednesday, May 3rd, Dr. Jon Herington presented “Quantifying Value Tradeoffs in Ventilator Allocation Under Crisis Standards of Care” during the Interdisciplinary Bioethics Noon Conference Series.
Policies designed to ethically allocate scarce resources often rely on untested assumptions about tradeoffs between ethical values (i.e. saving the most lives, saving the most life years, and non-discrimination against the chronically ill). Because these policies are implemented in complex, dynamic systems, many assumptions about these tradeoffs may turn out to be false. Thus, a rigorous and reproducible methodology to test such
assumptions is essential for bioethics to properly inform policymaking. Using a unique time series dataset of all ICU patients admitted to a large medical center during 2020-2021, we use Monte Carlo methods to simulate implementation of three different COVID-19 ventilator allocation protocols given different levels of scarcity.
MS Medical Humanities Students Present Final Capstone Projects
On Tuesday, March 24th, two of the graduating students from the MS Medical Humanities Program presented their final capstone projects to fellow students & department faculty.
Gretchen Strobbe’s project was titled, “Typologies in the Endo Narrative: An Exploration of the Voices that Penetrate Silence, Stigma, and the Struggle to Write About Pain.”
Alejandro Vera’s project was titled, “The Lived Experience of Vitiligo in the Visual Arts.”
Congratulations Gretchen & Alejandro on all your hard work and fantastic final projects!
Erik Larsen & Patricia Luck Finalists in AAMC NEGEA Conference
Several members of the department attended the Association of American Medical Colleges Northeast Group on Educational Affairs Conference in April. Erik Larsen and Patricia Luck were picked as finalists for the Excellence in medical Education Oral Abstract Presentation Award with Patricia winning 1 of the 4 awards for “The Photo/Tiny Story: A Novel Activity for Reflective Practice in Medical Education."
Congratulations Erik & Patricia!!
Laura Stamm received a grant from the Humanities Center for her project: “Making Public History: Oral Histories of COVID-19 and Rochester’s Black Communities”
This project seeks to provide a collection that captures the impact of COVID-19 on Rochester’s black communities. Using community-based participatory research methods (CBPR), this project will listen to, record, and preserve the experiences of those made most vulnerable by the pandemic. It is a widely accepted fact that COVID-19 disproportionately affects black communities, but there is little research available on how COVID-19 and the impact of the disproportional burden differently affects black communities. Moreover, most research on COVID-19 in marginalized communities is told from the perspective of scientific researchers, rather than by individuals who experience the everyday impact of the pandemic. Scholarship on vaccine hesitancy in the black community, for example, typically cites survey data and theorizes about why black people might not trust medical institutions without hearing directly from black community members about why their experiences and understandings of history cause them to distrust medicine. The proposed project will provide a collection of stories about COVID-19 directly from voices of Rochester’s black communities that centers their experiences and provides a new narrative of life and health during a global pandemic. Preserving these black oral histories in an archival collection and digitized open access platform affirms their historical importance and assures their existence for future generations.
Expanding the Role of Justice in Secondary Research Using Digital Psychological Data
Jonathan Herington1, Kevin Li2, Anthony R.Pisani3
1 Department of Health Humanities and Bioethics and Department of Philosophy, University of Rochester
2 Department of Family Medicine, University of Rochester
3 Center for the Study and Prevention of Suicide, Department of Psychiatry & Department of Pediatrics, University of Rochester
Abstract: Digital psychological data (DPD) can advance behavioral health research. Under current practices, much of secondary research does not require human subjects research review because data are de-identified. This standard approach to the ethics of secondary research (i.e. de-identification) does not address a range of ethical risks. We argue that greater emphasis should be placed on the ethical principle of justice. We outline inadequacy of an individually-focused research ethic for DPD and describe the range of unaddressed “social risks” generated by secondary research of DPD. These risks exist in the “circumstances of justice”: i.e. a circumstance where individuals must cooperate to create a public good (e.g. research knowledge), and where it is impractical to individually exempt individuals. Instead, we recommend greater emphasis upon the just allocation of benefits and burdens against a background of social cooperation. We explore six considerations for researchers who wish to use DPD in secondary research without explicit consent: (i) create socially valuable knowledge, (ii) fairly share the benefits and burdens of research, (iii) be transparent about data use, (iv) explore mechanisms for withdrawal of data, (v) ensure that stakeholders can provide input into the design and implementation of the research, and (vi) responsibly report limitations.
Congratulations Jon & Kevin!
Dr Shaw speaks with Boston Globe
Dr. Margie Shaw spoke with the Boston Globe and was quoted for the article, “Foundation stirs controversy by charging cancer patients $83,000 for unproven but promising experimental drug.”
Foundation stirs controversy by charging cancer patients $83,000 for unproven but promising experimental drug - The Boston Globe
Special Lecture: "Conceptually Engineering Disability"
Monday March 13th, 2023 11am, CEL 2-7520
Congratulations to the Alpha Omega Alpha Inductees for 2023!
We are excited to announce that we had several Pathways students as well as our own Dr. Margie Shaw inducted into Alpha Omega Alpha.
Congratulations Spencer Chen, Dalton LeBarge, Christian Dohring & Courtney Vidovich!
‘Changing Perspectives Through the Arts’ event
The Department of Health Humanities and Bioethics presents “Drawing On and From Healthcare” with Kriota Willberg, the next installment of the “Changing Perspectives Through the Arts” series, a collaboration of the Department of Health Humanities and Bioethics, Eastman Performing Arts Medicine, and Rochester community organizations. The event takes place Friday, March 10, at noon in the School of Medicine and Dentistry, Auditorium K-207 (2-6408), and via Zoom. Learn more and register for the Zoom link here.
Music Therapy Finds Its Rhythm at URMC
March is Music Therapy Month and, to honor URMC's music therapy program, we're taking you on a journey to discover the important work our team is doing to help patients—young and old—benefit from the healing sounds of music. Learn how the program began 25 years ago, and how it has grown to care for thousands of patients since its inception. Meet our team of music therapy collaborators and hear how their dedicated work resonates throughout the halls of our hospital.
Music Therapy Finds its Rhythm at URMC - URMC Today (rochester.edu)
The Nocturnist Podcast – Jackie Howitt’s Experience Volunteering During COVID Pandemic
OB/GYN Jackie Howitt and pediatrician Gretchen Volk bring us into the deserted airport where they first met in April 2020 on their way to offer COVID-19 relief in NYC. Though their friendship began at one of the most disorienting moments in their lives, the coincidences that followed made the connection feel almost fated.
Listen here: Serendipity in Shutdown — the NOCTURNISTS
Anatomy of Hate Grand Rounds – “Breaking the Silence: Dismantling Hate Through Restoring Community”
We have a unique opportunity to engage with an expert in restorative justice. Dr. Pedro Flores will be in Rochester next Tuesday, March 28 and Wednesday, March 29.
Reserve your spot now to learn about truth-telling, accountability, and reconciliation through restorative justice circles. Pedro Flores, Ph.D., a restorative justice practitioner, clinician, and healthcare administrator from Southern California, will host one virtual and two in-person circles on Tuesday, March 28th and Wednesday March 29th.
These sessions wrap up the Anatomy of Hate Grand Rounds series sponsored by the Office of Equity and Inclusion in partnership with the Department of Health Humanities and Bioethics, Paul M. Schyve, MD Center for Bioethics, and the Office of Alumni Relations and Constituent Engagement.
Special Lecture: "E’s a Funny Doctor: Dickie Orpen’s Second World War Cartoons and the Palliative Humor of the Surgical Ward"
Christine Slobogin, MPhil, PhD
Postdoctoral Fellow, Center for Medical Humanities
Johns Hopkins University
Friday March 31st, 2023, 11am - 12pm
Anderson Room (G-8534)
Special Lecture: "Healthy Forever? Medicine, Society, and the Life Co urse Transformed in Twentieth-Century America"
Cara Fallon, PhD
Lecturer in Global Health,
Monday April 1st, 2023, 11am - 12pm
Natapow Room (1-9545)