playing god?

When journalist Esmé Deprez receives a text from her father, Ron Deprez, asking for help to die, she enters one of the most ethically fraught spaces in modern medicine: Medical Aid in Dying (MAiD). This episode explores what it means to assist a loved one’s death under MAiD law—and how personal compassion collides with professional and societal ethics.This episode features:Esmé E. Deprez: Writer and investigative journalist. Jeffrey Kahn, PhD, MPH: Andreas C. Dracopoulos Director of the Johns Hopkins Berman Institute of Bioethics.Jennifer Eitingon, MD: Medical Director of Monument Health Hospice and Inpatient Palliative Care Attending Physician.You can see photos and read more about Esmé and Ron Deprez’s story in her 2021 essay, “Death With Dignity: How I Helped My Dad Die.” “playing god?” is a podcast by the iDeas Lab at the Johns Hopkins Berman Institute of Bioethics. To read a transcript of this episode, visit the iDeas Lab website at https://bioethics.jhu.edu/pgs2e1 The Johns Hopkins University Sesquicentennial is proud to support this podcast. JHU celebrates 150 years of pioneering education and research—advancing knowledge to meet the challenges of every generation. Learn more at 150.jhu.edu.

Back in the 1960s, a committee of seven Seattle residents met regularly to decide which patients with chronic kidney disease were “worthy” of life-saving dialysis. Whoever wasn’t selected by the committee would likely die within months. An exposé of this so-called “God Squad” helped spark the formation of a new field: bioethics. In this prequel to playing god?, we’ll find out how this committee made life-and-death decisions, and why something like it is unlikely to happen again. Show Notes:This episode features interviews with: Richard M. Mizelle, Jr., Associate Professor of History, University of HoustonKate Butler, Assistant Professor of Nephrology, University of Washington School of MedicineThe God Squad was just one of many notable cases that led to the formation of the field of bioethics. The Hastings Center, a bioethics research institute, has compiled a timeline of many of the most famous cases and their impact. Check it out here. The Berman Institute has also collected oral histories– first hand accounts of the doctors, philosophers, lawyers and other scholars who were involved in many of these cases. You can explore that collection here. To learn more about the ethics issues raised in this episode, visit the Berman Institute’s episode guide. The Greenwall Foundation seeks to make bioethics integral to decisions in health care, policy, and research. Learn more at greenwall.org.

Cheryl Yoder’s son Jase, was born with an incurable rare disease called spinal muscular atrophy (SMA), which meant he was unlikely to live beyond two years old. Jase managed to get a spot in a clinical trial for an experimental drug. It halted the disease and allowed him to grow up as an active little boy–a miracle cure. A growing list of uniquely tailored drugs can treat, and even cure, some debilitating and fatal diseases. But often these so-called “miracle drugs” can cost a fortune. In this episode: why miracle drugs cost so much, why it’s so hard to do anything about the costs and how challenging it is to work towards equitable access for patients who can benefit from them.Show Notes:In addition to Cheryl Yoder, this episode features interviews with:Tom Crawford, Co-Director, Muscular Dystrophy Association Clinic and Professor of Neurology, Johns Hopkins University School of MedicineHolly Fernandez Lynch, Assistant Professor of Medical Ethics and Health Policy, University of PennsylvaniaYou can learn more about spinal muscular atrophy, learn about the latest research, and find resources for those affected by the disease here. To learn more about the ethics issues raised in this episode, visit the Berman Institute’s episode guide. The Greenwall Foundation seeks to make bioethics integral to decisions in health care, policy, and research. Learn more at greenwall.org.

When Laurie Strongin’s son Henry was born with the rare, often fatal disease of Fanconi anemia, doctors told her that the best way to save his life was with an umbilical cord blood transplant from a genetically matched sibling. But Henry had no matching siblings. Laurie and her husband then got a call from a doctor with a novel idea of combining three technologies to create a child who was guaranteed to be a genetic match, raising the question: is it ethical to create a life in order to save another?Show Notes:In addition to Laurie Strongin, this episode features interviews with:John Wagner, Co-Leader of the Transplantation and Cellular Therapy Program, Professor in the Division of Transplant and Cell Therapy in the Department of Pediatrics, and the McKnight-Presidential Endowed Chair, Department of Pediatrics, Division of Pediatric Blood and Marrow Transplantation & Cellular Therapy, University of MinnesotaJeffrey Kahn, Andreas C. Dracopolous Director of the Johns Hopkins Berman Institute of BioethicsYou can learn more about Fanconi anemia, learn about the latest research, and find resources for those affected by the disease here. You can read more about the Strongin-Goldbergs’ and the Nashes’ stories in this New York Times article from 2001. Laurie Strongin went on to found the Hope for Henry Foundation, which works with hospitals to help provide support and better care for pediatric patients.To learn more about the ethics issues raised in this episode, visit the Berman Institute’s episode guide. The Greenwall Foundation seeks to make bioethics integral to decisions in health care, policy, and research. Learn more at greenwall.org.

It can take years to get to the top of the waiting list for a donated kidney in the U.S. So when Sally Satel found out she’d need a kidney transplant, she wondered why she couldn’t just buy one. We’ll hear from a behavioral economist and a bioethicist who shed light on the ban on organ sales and whether it’s possible to create an ethical compensation program for organs.Show notes:In addition to Sally Satel, this episode features interviews with: Jeffrey Kahn, Andreas C. Dracopolous Director of the Johns Hopkins Berman Institute of BioethicsMario Macis, Professor of Economic, Johns Hopkins Carey Business SchoolThis episode references the National Organ Transplant Act (NOTA), passed in 1984. This act established the national Organ Procurement & Transplantation Network (OPTN), which is operated by an outside contractor, the United Network for Organ Sharing (UNOS).The OPTN has its own ethics committee that has written guiding principles that influence how organs are allocated in the US. You can read this guidance here. To learn more about the ethics issues raised in this episode, visit the Berman Institute’s episode guide. The Greenwall Foundation seeks to make bioethics integral to decisions in health care, policy, and research. Learn more at greenwall.org.

When a 13 year-old girl from Oakland named Jahi McMath was pronounced brain dead after a surgical complication in 2013, California issued her a death certificate. Five years later, she received a second death certificate in New Jersey. How could one person die twice? In this episode, we learn that the line between life and death isn’t always as clear as you might think. Show notes:This episode features interviews with:Yolonda Wilson, Associate Professor at the Albert Gnaegi Center for Health Care Ethics at Saint Louis UniversityJeffrey Kahn, Andreas C. Dracopolous Director of the Johns Hopkins Berman Institute of BioethicsBob Truog, who is the Frances Glessner Lee Distinguished Professor of Medical Ethics, Anaesthesia, and Pediatrics at Harvard Medical School and Boston Children’s Hospital.This episode references a New Yorker article about Jahi’s case, which you can read here. It also references the Uniform Determination of Death Act (UDDA), which you can read here. To learn more about the ethics issues raised in this episode visit the Berman Institute’s episode guide.The Greenwall Foundation seeks to make bioethics integral to decisions in healthcare, policy and research. Learn more at greenwall.org.

A new podcast about the complex ethical questions that get raised with groundbreaking medical innovations. Brought to you by Pushkin Industries and the Johns Hopkins Berman Institute of Bioethics. New episodes weekly starting October 10.