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Bioethics in the Margins

Kirk Johnson and Amelia Barwise

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Who we are: We are a collaborative of bioethics scholars interested in creating a more inclusive space to explore topics relevant to bioethics and the medical humanities while advancing equity and social change/restitution. Although we found our shared interests through our membership in the American Society for Bioethics and Humanities Race Affinity Group, we are independent of ASBH and any other organization. The views expressed in this podcast are our own and the speakers and do not repre ...
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Episode Summary In this episode, I talk with Jay Silverman, an award-winning filmmaker known for his emotionally resonant work. Jay discusses his journey into feature filmmaking, which began with "Girl on the Edge", a deeply personal film inspired by his daughter's recovery through equine therapy. His latest film, "Camera", is another heartfelt pro…
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Episode Summary Noah, my ATV guide in Alaska, joins me on this episode of Wisdom Shared. Last season, we heard from Noah's mom, Melissa, who talked about her sobriety journey. In this discussion, Noah courageously shares his difficult journey with pills. He nearly died. He offers advice, hope, and solidarity to others facing similar struggles. His …
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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 …
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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 in…
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Episode Summary Sharon "Rocky" Roggio is my special guest - the producer and director of the award-winning documentary "1946: The Mistranslation that Shifted Culture." This film explores the profound impact of a mistaken biblical translation of the word "homosexual" and its consequences on culture, religion, and the LGBTQ community. Rocky shares he…
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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…
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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 f…
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Episode Summary In this conversation with filmmaker and self-described Renaissance Man Stewart Schulman, we discuss his multifaceted career and his collaborations with John Bayless, highlighting projects like One Hand One Heart and the award-winning feature documentary Left Alone Rhapsody: The Musical Memoir of Pianist John Bayless. Schulman shares…
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Episode Summary My special guest for this episode is pianist John Bayless, whose story is featured in the incredible documentary Left Alone Rhapsody: The Musical Memoir of Pianist John Bayless. In our conversation, John reflects on life before and after his stroke. Post-stroke, John's resilience shines through as he embarks on a remarkable path of …
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Episode Summary In this poignant episode, Jacob Moench shares the challenges and joys of parenting his son Samuel, who has epilepsy and autism. The episode explores how Jacob and his wife support each other and prioritize time for their other children. Jacob also talks about his company, which offers genetic testing for preventative illness, and we…
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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 d…
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Episode Summary In this episode, Lynn Greenberg and her son Jonathan, co-authors of Robby the Dyslexic Taxi and the Airport Adventure, share insights into Jon's journey with dyslexia. Emphasizing the transformative impact of education post-diagnosis, they discuss the power of creativity and the hidden gifts of neurodiversity. Jon, who views dyslexi…
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Episode Summary Join me as I welcome back Amy and her daughter, Lizzie, for an insightful discussion. In this episode, we delve into Lizzie's harrowing encounter with toxic shock syndrome (TSS), exploring the severe implications and her journey to recovery. Amy shares the critical moments that led to her life-saving discovery of Lizzie's condition …
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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 bio…
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Episode Summary Join us in a touching conversation with Amy and her daughter Lizzie as they share their experiences with 18-year-old Mathew, who was diagnosed with autism. Amy discusses the challenges of raising Mathew, including how eliminating certain food dyes helped reduce his aggressive behavior. Lizzie shares insights on being an older sister…
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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 experie…
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EPISODE SUMMARY This is a replay of a previously released episode, for Blindness Awareness Month. In this episode, we meet Josh Burch, a 48-year-old man who was born with Optic Nerve Hypoplasia. Josh talks about the challenges of growing up blind and shares how he navigates a world built for sighted people with the help of technology and his guide …
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EPISODE SUMMARY This is a replay of a previously released episode, for Blindness Awareness Month. Julie Burch is an accomplished author (pen name: Juliet Brilee) and stepmother to Josh, who was born blind. Now 48 years old, he lives independently with his seeing-eye dog, Lou. In this episode, Julie shares what it was like to raise a blind child. Sh…
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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 Bloomb…
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Episode Summary In part 2 of my conversation with retired FBI Special Agent Aaron Weeter, we learn more about life as an FBI agent. Aaron explains how he got started, what it was like to work on high-profile cases like 9/11, the DC Sniper, and January 6th, and how he ultimately specialized in drug-related crimes for most of his career. It was fasci…
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Episode Summary Since 1999, more than one million people have died from a drug overdose in the United States. On International Overdose Awareness Day, we reflect on these senseless preventable deaths. Today, we hear from previous Wisdom Shared guest Anne Pratt on the loss of her brother Daniel from an accidental overdose. May this powerful personal…
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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 Concentra…
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Episode Summary Our last episode explored addiction from the perspective of loved ones. In this episode, we are looking at the opioid crisis from the point of view of a retired FBI agent, Aaron Weeter, who spent 25 years specializing in drug-related crimes. From his frontline perspective, we learn how the opioid epidemic of the 90s spread to become…
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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 importa…
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Episode Summary In this episode, I'm joined by two special guests, harm reduction activist Julie Stampler and award-winning documentary filmmaker Jamie Boyle. We discuss the opioid epidemic through the frame of the incredible documentary Anonymous Sister, directed by Jamie Boyle, produced by Marilyn Ness, and executive produced by Julie Stampler. T…
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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…
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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 w…
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Episode Summary Melissa Conrey shares her story of living with drug and alcohol addiction and now, sobriety. A single mom of two, she worries about her children who have been exposed to so much. She went back to school to earn her degrees and is now a registered dietician. Melissa speaks openly about her challenges and her victories. For the visual…
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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…
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Episode Summary This episode features mother and daughter Bobbie and Angela Singletary. This dynamic duo shares their story, full of hardship, resilience, joy, love, and support. Bobbie, Angela, and two of Angela's kids all have achondroplasia, a form of dwarfism, as did Angela's late sister Cindy. Listen how Cindy’s life at 33 could not be saved d…
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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 motiva…
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EPISODE SUMMARY Lisa Greer is a mother of five, a former executive and business owner, a convener of charitable events, and the author of Philanthropy Revolution. We discuss her childrens' diagnoses with cancer and adolescent-onset epilepsy and how that affected the whole family. Lisa explains how transparency fosters trust, something that applies …
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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 …
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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 t…
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Episode Summary In this episode, we meet Patty Braendel, a special education teacher who is an adoptive mom, a birth mom, and also a foster mom. We hear about her journey to parenthood with all its ups and downs and learn how her experiences as a parent have helped her work in special education. For the visually-minded who prefer to listen and read…
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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 Nov…
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EPISODE SUMMARY Kathryn Paylor-Bent has a lot of wisdom to share and we cover a lot of ground in this conversation. We talk about her experiences as a disabled woman, wheelchair user, and the CEO of two successful businesses. She uses her disability as inspiration for her successful career as an adaptive fashion designer and as a consultant to othe…
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Episode Summary: In this episode, we meet Dom Raban, a designer, software developer, and father of Issy. Issy underwent cancer treatment at age 13. While Issy is now a young adult and cancer-free, the lack of information given to Issy during her treatments prompted her father to create a child-centered app called Xploro. This amazing app was design…
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Eleven-year-old Easton and his mother Jennifer are a great son-mom team. In this episode, we will hear from both and learn about support dogs, supercars, playgrounds, pregnancy, birth, and spina bifida. For the visually-minded who prefer to listen and read, watch the transcript video here: https://youtu.be/yVwx-zwqNhM FIND AND FOLLOW JENNIFER: crof…
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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 …
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George Estreich is an award-winning writer whose work includes poetry, memoir, and non-fiction. He is also a musician who plays with the band Mule On Fire. In addition to writing and music. George is an activist, storyteller, husband, and father to Ellie and Laura. George talks about raising his daughter, Laura, who was born with Down syndrome. And…
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Kirk and Amanda interview Jennifer McCurdy, PhD (@JennyMac222) about her new article in the Hastings Center Special Report: A Critical Moment in Bioethics: Reckoning with Anti‐Black Racism through Intergenerational Dialogue titled "Colonial Geographies, Black Geographies, and Bioethics" (https://onlinelibrary.wiley.com/doi/10.1002/hast.1375). After…
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Video with transcript: https://youtu.be/Su9LTiwiyGQ Laura, a young woman with Down syndrome talks about her life and goals. For more information about Down syndrome, see here. FROM THIS EPISODE: DEC - Disability Equity Center WINGS Transition Program Unified Sports - Special Olympics Oregon Health & Science University George Estreich BOOK: The Shap…
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This month, we are so pleased to have a conversation with Gabo Arora, an award-winning filmmaker and Founder & Creative Director of LightShed (https://lightshed.io/), a virtual reality and social impact start-up. The UN's first-ever Creative Director, Gabo Arora has over 15 years of humanitarian field experience, and has directed, produced and pion…
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EPISODE SUMMARY In this episode, we meet Josh Burch, a 48-year-old man who was born with Optic Nerve Hypoplasia. Josh talks about the challenges of growing up blind and shares how he navigates a world built for sighted people with the help of technology and his guide dog, Lou. We also hear more from Josh's stepmother, Julie Burch, and learn how the…
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Kirk and Amelia interview our very own sound editor Nicole Strand, JD, MBE, MPH. @Nicolle_Strand is the Assistant Director for Research at the Center for Urban Bioethics at Temple University. Her work is on structural determinants of health, racism, health equity, advocacy, and culture change. We discuss critical race theory, the use of race in bio…
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EPISODE SUMMARY Julie Burch is an accomplished author (pen name: Juliet Brilee) and stepmother to Josh, who was born blind. Now 48 years old, he lives independently with his seeing-eye dog, Lou. In this episode, Julie shares what it was like to raise a blind child. She introduces us to how she helped Josh spatially map his environment, and talks ab…
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This month, Kirk and Amelia sit down with Daphne Martschenko, who is an interdisciplinary, mixed-methods researcher working at the intersections of bioethics, the social sciences, and the Ethical, Legal, and Social Implications of genetics. Find out about adversarial collaboration and more. Dr. Martschenko’s scholarship investigates the ethical and…
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EPISODE SUMMARY In this episode Jillian and Audrey, mother and daughter, share their perspectives about dwarfism and offer helpful advice and wisdom along the way. They speak about topics ranging from the "sport" of dwarf-tossing to some very enlightening and evolved perspectives on disability, advocacy, decision-making, overcoming challenges, and …
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In our first episode of Season 2, we discuss gender affirming care for transgender youth with experts Renee Reopell, LCSW and Patrick Herron, DBe. The issues we explore include the discrimination, disparities in healthcare, mental illness and challenging ethical issues around medical care that non-binary youth continue to face today. Our guests als…
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