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We are so excited to have our very first librarian, Laureen Cantwell-Jurkovic, on the show to discuss the impact of and potential responses to the onslaught of book challenges and bans that have exponentially increased since 2022. Dr. Cantwell-Jurkovic is head of access services and outreach at Colorado Mesa University. She has researched and published on information literacy instruction and critical thinking activism. Amelia and Kirk explore with Dr. Cantwell-Jurkovic many consequences of book bans and challenges, which have increased more than 100-fold over the past several years, including "soft censorship" and self-censorship that result from the large administrative burden that results from responding to thousands of challenges, even when a particular book is ultimately not banned outright. Dr. Cantwell-Jurkovic walks us through how local activities at the level of school districts and municipalities ultimately influence policies at the county, state and even potentially national level. She emphasized the danger of these limitations which can come from people on all parts of the political spectrum. She then explored the unique properties of books, which have a special ability to build empathy through reading fiction, and Kirk explored how lack of access to books could have downstream effects when healthcare professionals are not exposed to diverse narratives as children. Finally, the importance of protecting libraries and books at the local level was highlighted.
Being a librarian, Dr. Cantwell-Jurkovic shared many resources with us. Some are included here and more will be available on our website in the show notes.
Organizations to Know:
American Library Association (ALA): www.ala.org
Freedom to Read Foundation (FTRF): https://www.ftrf.org/
Data:
Banned Books Week data: http://www.ala.org/advocacy/bbooks/book-ban-data
About Banned Books: https://www.ala.org/bbooks/aboutbannedbooksBanned Books Week 2025: https://bannedbooksweek.org/ALA Censorship by the Numbers site: https://www.ala.org/bbooks/censorship-numbersPreliminary data for 2024: https://www.ala.org/news/2024/09/american-library-association-reveals-preliminary-data-2024-book-challenges -
We are back with season 7, chatting with Brian Tuohy, PhD, a sociologist of immigration and health, assistant professor of bioethics, and co-director of education at the Lewis Katz School of of Medicine at Temple University. We use the lens of immigrant health to delve into some deeper questions like "What does bioethics mean?" Dr. Tuohy generously shares his own personal and professional journey into the field, highlighting the interdisciplinary nature of bioethics. He discusses his own family's immigration story and research with Mexican immigrants to the United States to bring out contrasts and nuances in the experiences of different groups based on language, age at immigration and a multiplicity of immigration status categories. We touch on some issues in ethical conduct of research with immigrant communities and conclude with a deep reflection on the power that bioethicists have as insiders in the healthcare industry and the importance, joys and responsibility of teaching the next generation of physicians.
Some of Dr. Tuohy's work can be found here:
Brian Tuohy, Health Without Papers: Immigrants, Citizenship, and Health in the 21st Century, Social Forces, Volume 98, Issue 3, March 2020, Pages 1052–1073, https://doi.org/10.1093/sf/soz048
Rocco, P., & Tuohy, B. (2021). A New Dawn of Bioethics: Advocacy and Social Justice. The American Journal of Bioethics, 22(1), 23–25. https://doi.org/10.1080/15265161.2021.2001105
Tuohy B, Jatres J. Researching Those in the Shadows: Undocumented Immigrants, Vulnerability, and the Significance of Research. Am J Bioeth. 2023 Jun;23(6):106-109. doi: 10.1080/15265161.2023.2204053. PMID: 37220350.
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In this episode, Kirk and Amelia speak with Asha Hassan, MPH, a doctoral candidate at the University of Minnesota School of Public Health. Together, they discuss her recent work on the link between exposure to tear gas during the 2020 protests for racial justice and consequent reproductive health issues. Asha explores the lack of sufficient policy innovation about banning chemical agents in protest settings as well as how systemic racism and ableism lead to patterns of healthcare underutilization. They also discuss the intersection of structural racism, disability justice, and abortion access. Asha identifies the legal challenges that the Dobbs decision poses to healthcare providers and how these legal challenges exacerbate the racial, ableist and classist barriers to abortion and all elements of reproductive justice. Asha encourages listeners in the wake of the Dobbs decision to consider Latin America’s recent reproductive justice wins as an example of successful grassroots, consensus- building and community-led change, urging us to consider policy that moves beyond Roe v. Wade to frame reproductive justice through the lens of bodily autonomy particularly for those who are most marginalized.
Mentioned articles:
https://bmcpublichealth.biomedcentral.com/articles/10.1186/s12889-021-10859-w#:~:text=Conclusion,often%20led%20to%20healthcare%20utilization
https://carhe.umn.edu/research-library/more-tears-associations-between-exposure-chemical-agents-used-law-enforcement-and
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9836943/
Asha Hassan is a doctoral candidate at the University of Minnesota School of Public Health in the Center for Antiracism Research for Health Equity who focuses on reproductive health equity, abortion access and policy, and police violence as a manifestation of structural racism. She was named a Society of Family Planning Emergent Scholar in 2020 and a National Birth Equity Research Scholar in 2021. Asha’s current doctoral research focuses on analysis of the relationship between racism and abortion access in Minnesota, and she hopes to continue working on issues of disability justice with a focus on community and provider education.
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In this episode, Amelia and Kirk speak with Lynette Martins who is co-leader of the ASBH immigration affinity group with Dr. Brian Tuohy and a recent graduate from Georgetown Law’s O’Neill Institute in national and global health law. Ms. Martins highlights the importance of Medical-Legal Partnerships in identifying and addressing both direct and indirect impacts that legal issues and policy have on health and healthcare access and outcomes. MLP’s are particularly helpful for addressing the Social Determinants of Health, the non-medical conditions in the environments in which we live, learn, work, and play that can negatively influence patient outcomes. MLP’s provide collaborative spaces for interdisciplinary dialogue, enhancing individual patient care while also helping healthcare institutions address recurrent issues that may be impacting specific patient populations.
Further reading can be found here:
https://medical-legalpartnership.org/wp-content/uploads/2019/04/Financing-MLPs-View-from-the-Field.pdf
https://medical-legalpartnership.org/wp-content/uploads/2020/10/Health-Center-MLP-Toolkit-FINAL.pdf
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In this episode, Kirk and Amelia speak with Dr. Deepshikha Ashana about her research on racial disparities present in shared decision-making practices in critical care. Dr. Ashana shares how her research interests were motivated by her personal observations of racial disparities, from her childhood in India, her experience moving to the US, and her education in Philadelphia. Her recent research thematically analyzed audio recordings of conversations between families and clinicians of critical care patients, using inductive analysis to identify four ways that communication behaviors differed in clinicians’ engagement with racially minoritized families. She discussed the racialized empathy gap, how cultural health capital is received differently from Black versus white families, and the striking disagreements in self-reports of conflict between clinicians and family members that fall along racial lines. She also discussed the importance for critical care clinicians to be trained in trauma-informed practices. In thinking about what is next in her research, she highlighted the importance of finding effective ways to mitigate the effects of structural racism on the healthcare system which go beyond the limitations of implicit bias training, and she emphasized her passion for empowering clinicians to offer the best care possible.
Dr. Ashana is an assistant professor of medicine in Duke’s Division of Pulmonary and Critical Care and a practitioner in the Duke University Hospital medical intensive care unit and at Duke Health Center at Southpoint. Her research focuses on understanding and addressing mechanisms of differences in critical illness care among underserved patients. She uses mixed methods to study epidemiologic trends in national health claims data and understand patient perspectives on serious illness care, with a particular focus on modifiable clinician and health system factors. Her work can be found here: https://medicine.duke.edu/profile/deepshikha-ashana
Referenced articles: https://jamanetwork.com/journals/jamainternalmedicine/article-abstract/2815259
https://www.atsjournals.org/doi/10.1513/AnnalsATS.201909-700IP
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Amelia and Kirk chat with Dr. Mark Kuczewski, Professor of Medical Ethics at Loyola University, Chicago. In this episode, they discuss his recent article https://www.healthaffairs.org/content/forefront/nonprofit-health-care-behaves-badly-case-mission-leaders-ombudsmen in which Dr. Kuczewski elucidates the challenges nonprofit healthcare employees face as workplace culture becomes increasingly corporatized and the importance of counterweights– in the form of ombudsmen, better-designed incentive structures, and virtuous local board members– who can potentially help promote the nonprofit mission for patients. They also discuss Dr. Kuczewski’s publication on organizational ethics and the importance of hiring for mission (https://www.researchgate.net/publication/6121839_Is_Organizational_Ethics_the_Remedy_for_Failure_to_Thrive_Toward_an_Understanding_of_Mission_Leadership).
Dr. Kuczewski describes the “patchwork” of healthcare available to undocumented immigrants and the need to sever the tie between immigration status and healthcare access and talks about his work with Loyola University Chicago Stritch School of Medicine to accept DACA recipients into its program.
Dr. Kuczewski is the Father Michael I. English S.J. Professor of Medical Ethics at Loyola University, Chicago, the director of the Neiswanger Institute for Bioethics and Health Policy, and a Fellow of the Hastings Center. His current interests include the bioethical issues related to immigration. He served as the project manager of the Loyola University Chicago Stritch School of Medicine effort to include Dreamers in medical education, wherein Stritch became the first medical school in the nation to welcome applications from Dreamers of DACA status.
https://www.luc.edu/stritch/bioethics/aboutus/facultydirectory/profiles/kuczewskimark.shtml
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Kirk and Amelia had the pleasure of speaking with Dr. Anita L. Allen, the Henry R. Silverman Professor of Law and Professor of Philosophy at the University of Pennsylvania. In this episode, they discuss Dr. Allen’s experiences working on President Obama’s Presidential Commission for the Study of Bioethical Issues where she engaged in deliberative democracy approaches to explore challenges with advances in biomedicine, technology and synthetic biology. A highlight of her time there included a report titled “Ethically Impossible” that documented and acknowledged gross human research subject abuses that occurred in Guatemala from 1946-1948, overseen by the US Public Health Service. (https://bioethicsarchive.georgetown.edu/pcsbi/sites/default/files/Ethically%20Impossible%20(with%20linked%20historical%20documents)%202.7.13.pdf). Other aspects of Dr. Allen’s prolific career that they discuss include her work on the concept of privacy, reproductive justice and racial justice concerns in what Dr. Allen has termed “The Black Opticon” (https://www.yalelawjournal.org/forum/dismantling-the-black-opticon).
Dr. Allen is an internationally renowned philosopher with over 120 articles and chapters published at the intersection of bioethics, privacy and data protection law, women’s rights, and diversity in higher education. She is a graduate of Harvard Law, currently serving on the Board of the National Constitution Center, the Future of Privacy Forum and the Electronic Privacy Information Center.
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Dr. Stephen Hargarten is a Professor of Emergency Medicine, Associate Dean for Global Health, Director of the Global Health Pathway, and Director of the Comprehensive Injury Center at the Medical College of Wisconsin. His research interests reflect an intersection of injury and violence prevention and health policy to address the burden of this biosocial disease. He was the founding President of the Society for the Advancement of Violence and Injury Research and has served on the Violence and Injury Prevention Mentoring Committee for the World Health Organization. In his conversation with Amelia and Kirk, he makes a compelling argument for considering firearm injury as a disease and a public health crisis. They discuss state and federal policies that can and do affect this primarily political disease. Dr. Hargarten also explains the use of a biopsychosocial model for healing from firearm injury and calls for medical educators to include firearm injury mechanisms, prevention and treatment in curricula. Selected publications are included below.
Commentary: Moving Emergency Medicine Toward the Biopsychosocial Disease Model(Hargarten S.) Annals of Emergency Medicine. November 2019;74(5):S52-S54 SCOPUS ID: 2-s2.0-85073691318 11/01/2019
Gun Violence Education in Medical School: A Call to Action(Barron A, Hargarten S, Webb T.) Teaching and Learning in Medicine. 2022;34(3):295-300 SCOPUS ID: 2-s2.0-85104939062 01/01/2022
A scoping review of patterns, motives, and risk and protective factors for adolescent firearm carriage(Oliphant SN, Mouch CA, Rowhani-Rahbar A, Hargarten S, Jay J, Hemenway D, Zimmerman M, Carter PM.) Journal of Behavioral Medicine. 15 August 2019;42(4):763-810 SCOPUS ID: 2-s2.0-85069995818 08/15/2019
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Amelia and Kirk have a broad-ranging discussion with Adira Hulkower, the Director of Clinical Ethics at the Montefiore Einstein Center for Bioethics in the Bronx. She shares her experiences as a clinical ethics consultant applying the concept of Dignity of Risk to better understand the ethical implications of discharge planning for patients experiencing homelessness. They discuss healthcare institutional responsibilities related to social determinants of health broadly as well as to individual patients. The importance of intersectionality and patient narratives are explored.
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We are joined by Rachel Fabi, PhD, Associate Professor of Bioethics and Humanities at SUNY Upstate Medical University. She is a Faculty Research Affiliate at the Syracuse University Lerner Center for Public Health Promotion. She received her Ph.D. in Health Policy and Management, in the Bioethics and Health Policy track, at the Johns Hopkins Bloomberg School of Public Health, and served as the 2019-2021 National Academy of Medicine Greenwall Fellow in Bioethics.Dr. Fabi shares her insights on policies that affect the health of immigrants and refugees in the United States, and discusses her research on a broad range of topics such as access to care, reproductive health and treatment in ICE detention. Listen to the end for her insights into the role of physician advocacy.
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We kick off Season 5 with the phenomenal Dr. Keisha Ray, who received her PhD in philosophy, with a focus on bioethics, from the University of Utah. She is currently a tenured Associate Professor with the McGovern Center for Humanities & Ethics at UT Health Houston, where she also serves as the Director of the Medical Humanities Scholarly Concentration. Kirk and Amelia chat with her about new book Black Health. Listen to our discussion with Dr. Ray on the importance of writing for pre-health students, undergraduates and high school students to teach folks early on about institutional racism. We take a deep dive into some topics such as the role of sleep in overall health and health disparities and the concept of weathering.
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In this episode, we are joined by Dr. David Kountz, MD, MBA, FACP who is the Chief Academic Officer and Vice President of Academic Diversity for Hackensack Meridian Health, a 17 hospital network in Northern and Central New Jersey. Kirk and Amelia explore a range of strategies to promote equity in clinical care with Dr. Kountz, including the importance of pipeline programs to enhance the diversity of the clinician pool and tying organizational quality metrics to equity outcomes in order to enhance quality of care. We also explore what ethical obligations physicians may have to advocate for equity in public policy.
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We reached out to Dr. Nathaniel Morris after reading his recent article in the New England Journal of Medicine; Injustice Disorder. Dr. Morris is currently an Assistant Professor of Clinical Psychiatry at the University of California San Francisco and provides care to incarcerated patients in the San Francisco jail system. He has published numerous journal articles on mental health care in jails and prisons, the criminalization of people with mental illness and addiction, and other topics in psychiatry and the law. Other publications include; Cell Front: The House Calls of Mass Incarceration in Annals of Internal Medicine; From Crime to Care - On the Front Lines of Decarceration in NEJM; and Addressing Shortages of Mental Health Care Professionals in U.S. Jails and Prisons in the Journal of Correctional Health Care.
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Amelia and Kirk speak with Tim Schwab, an investigative journalist based in Washington DC whose work has appeared in The Nation, the Columbia Journalism Review, the British Medical Journal and other outlets. https://about.me/tim_schwab. Today's episode is all about philanthropy and power, and the ethical implications of this facet of concentrated wealth. We discuss implications for public health https://www.thenation.com/article/society/gates-covid-data-ihme/, vaccine distribution and more, while examining how this type of philanthropy perpetuates existing power structures and undermines health in insidious ways https://www.thenation.com/article/society/gates-foundation-colonialism/.Amelia's article When Generosity Harms Health Care and Public Health can be found here: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6603488/Tim Schwab is currently writing a book (Henry Holt Books) about Bill Gates and the Gates Foundation---"The Bill Gates Problem"----which is available for pre-order anywhere you buy books. https://www.amazon.com/Bill-Gates-Problem-Reckoning-Billionaire-ebook/dp/B0BTX5FWNF/ref=sr_1_1?keywords=bill+gates+problem+tim+schwab&qid=1679948365&sr=8-1
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Kirk and Amelia continue our discussion of Epistemic Injustice with Ryan Felder, PhD. Ryan is a Clinical Ethics Fellow at the Stanford Center for Biomedical Ethics. He earned his PhD in philosophy from the City University of New York in 2021. He shares his thoughts on the practical applications of Epistemic Injustice in clinical ethics consultation as well as how Epistemic Injustice relates to our understandings of cannabis efficacy and long COVID among other things. Ryan's other work can be found here: https://onlinelibrary.wiley.com/doi/full/10.1002/hast.1248.
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Amelia and Kirk interview Jada Wiggleton-Little who is a PhD Candidate at UC San Diego working primarily in philosophy of mind, social epistemology, and clinical ethics. Ms. Wiggleton-Little unpacks her theory called pain-related motivational deficit. Pain-related motivational deficits occur when a self-reported pain is believed but fails to motivate concern because ideologies distort either features of the speaker in pain (e.g., obese people deserve their pain) or distorts the kind of pain being expressed (e.g., excruciating period pains are normal). To resist these oppressive distortions, patients often adopt performative strategies that cater to gender and racial expectations and the medical gaze. It is a way of reclaiming one's agency in the clinic, but it is also a laborious task for patients already suffering with chronic pain. Listen for practical solutions and find out what it would look like to be an epistemically humble clinician.
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Listen to the whole team discussing the process of developing the Bioethics in the Margins podcast, where we've been on our podcast journey and where we hope to go. Amelia Barwise, Liz Chuang, Kirk Johnson and Nicolle Strand met each other in person for the first time ever this October in Portland, Oregon for the ASBH annual meeting. We heard some great ideas from attendees and had a lot of fun. Don't hesitate to tweet us @BEInTheMargins with your ideas for topics and guests.
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In this episode, Kirk and Amanda interview Ander Etxeberria-Otadui, the head of Mondragon’s cooperative outreach program. Mr. Etxeberria shares the unique and fascinating history of the Mondragon Corporation https://en.wikipedia.org/wiki/Mondragon_Corporation, as we discuss the impact of solidarity on health and wellbeing. Mr. Etxeberria explains the importance of synergy between solidarity-based and business-minded decision-making within the corporation. We explore the effects of income inequality on safety and mental and physical health of workers and communities.
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We interview Christopher D.E. Willoughby is a historian of slavery and medicine in the United States and a Visiting Assistant Professor of the History of Medicine and Health at Pitzer College in Claremont, California. He is the author of the book Masters of Health: Racial Science and Slavery in U.S. Medical Schools, which will be published this November by the University of North Carolina Press (https://uncpress.org/book/9781469672120/masters-of-health/), and with Sean Morey Smith, he edited the book Medicine and Healing in the Age of Slavery. He has also written several popular articles for The Washington Post, AL.com, and Black Perspectives. Listen to the conversation about the history of slavery, racism and racial "science" in medical education.
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In our final episode of season 2, we welcome Bryan Pilkington (@bcpethics) A,ssociate Professor in the School of Health and Medical Sciences, Adjunct Associate Professor in the College of Nursing, and Affiliated Faculty in the Department of Philosophy at Seton Hall University. He is also Professor at the Hackensack Meridian School of Medicine. His research focuses on questions in bioethics, where he is especially interested in questions of conscience, moral responsibility, and the practices of the health professions, and in moral and political philosophy, where he is especially interested in the concept of dignity and in moral disagreement. He lectures on practical ethical challenges in healthcare and teaches courses in normative and applied ethics. We enjoyed listening to his thoughts on the role of dignity in framing a wide range critical moral issues of our time. Professor Pilkington has a chapter on Teaching Dignity in the Health Professions (https://tinyurl.com/2p96dtxe) and has recently written about ethical issues during the COVID pandemic (https://muse.jhu.edu/article/766298) and the importance of bioethics advocacy in the treatment of individuals detained by Immigration and Customs Enforcement (https://www.thehastingscenter.org/detention-dignity-and-a-call-for-bioethics-advocacy/). Also mentioned in this episode are Ruth Macklin's criticism of the use of the concept of dignity in bioethics (https://www.bmj.com/content/327/7429/1419), the work of John Evans (https://johnhevans.ucsd.edu/research/what-is-bioethics/) and the documentary The Belly of the Beast on illegal sterilizations in California women's prisons (https://www.bellyofthebeastfilm.com/).
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