playing god?

Prequel: The God Squad

Pushkin Industries — Tue, 12 Dec 2023 04:00:00 -0100

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 Houston

Kate Butler, Assistant Professor of Nephrology, University of Washington School of Medicine

The 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.

The Future of Baby-Making

Pushkin Industries — Tue, 05 Dec 2023 04:00:00 -0100

In this episode we head into the future to learn about a controversial technology that could change the face of reproduction. Researchers are developing a technology called in vitro gametogenesis (IVG), which can reprogram human cells–like a skin cell–to become eggs or sperm. With IVG we could reach a future where anyone could produce either eggs or sperm, in potentially limitless quantities. This could open up a whole world of new options for how humans reproduce. Startup companies are working to bring this science to the public in ways that bypass the usual research routes for new reproductive technologies. When would it be ethically acceptable to try IVG to make a baby? How can we ensure the technology will be used ethically, including how it should be regulated?

Show Notes:

This episode features interviews with:

Amander Clark, Professor, Molecular, Cell and Developmental Biology, University of California, Los Angeles

I. Glenn Cohen, James A. Attwood and Leslie Williams Professor of Law, Deputy Dean and Faculty Director, Petrie-Flom Center for Health Law Policy, Biotechnology & Bioethics, Harvard Law School

In 2023, the National Academies held a meeting to discuss the scientific, ethical, and legal implications of IVG. You can watch this meeting and learn more about IVG 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.

Miracle Drugs, Million Dollar Price Tags

Pushkin Industries — Tue, 28 Nov 2023 04:00:00 -0100

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 Medicine

Holly Fernandez Lynch, Assistant Professor of Medical Ethics and Health Policy, University of Pennsylvania

You 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.

An Off Switch For Depression?

Pushkin Industries — Tue, 21 Nov 2023 04:00:00 -0100

For years Brandy Ellis had tried everything to treat depression but nothing worked. Then one day she heard about something called deep brain stimulation, a brain implant that treats some neurological conditions. This technological intervention–that changed her life–also raises ethics questions. Because brain implants have the potential to change our personalities and our performance– where do we draw the line? Are we giving such devices too much control over who we are by using them to alter fundamental human traits like our emotions?

Note: This episode contains references to suicide. If you or someone you know is struggling with thoughts of suicide, there are resources that can help you. In the US, dial 988 to reach the Suicide & Crisis lifeline for free 24/7 confidential support from a trained listener. Or text SAVE to 741741 to reach a trained helper at the Crisis Text Line.

Show Notes:

In addition to Brandy Ellis, this episode features interviews with:

Patricio Riva Posse, Associate Professor, Psychiatry and Behavioral Sciences, Emory University School of Medicine

Karen Rommelfanger, Founding Director, Institute of Neuroethics; CEO, Ningen Neuroethics Co-Lab; Senior Faculty Fellow, Emory University Center for Ethics (previously director of the Neuroethics Program); Adjunct Associate Professor, Departments of Neurology, Psychiatry & Behavioral Sciences, Emory University School of Medicine.

You can learn more about deep brain stimulation (DBS) 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.

Creating One Life to Save Another

Pushkin Industries — Tue, 14 Nov 2023 04:00:00 -0100

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 Minnesota

Jeffrey Kahn, Andreas C. Dracopolous Director of the Johns Hopkins Berman Institute of Bioethics

You 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.

A Womb of One’s Own?

Pushkin Industries — Tue, 07 Nov 2023 04:00:00 -0100

Jen Dingle yearned to get pregnant and have children, but there was one problem: she was born without a uterus. So when she was ready to have children she was desperate to find a way to do it. That’s when she learned that a local research hospital was starting up a uterus transplant program – one of the first in the U.S. Jen shares her personal experience and we explore the risks, financial costs and ethical issues of this new combination of organ transplant and reproductive technology.

Show Notes:

In addition to Jen Dingle, this episode features interviews with:

Ruth Farrell, Vice Chair of Research of the OB/GYN and Women’s Health Institute, and Professor at the Center for Bioethics at the Cleveland Clinic

Liza Johanneson, Medical Director of Uterus Transplant, Baylor Scott & White Medical Center

You can learn more about the uterus transplant program at Baylor here. Dr. Farrell co-authored this article reviewing the state of uterus transplantation as of 2021.

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.

Disclaimer: The views and opinions of those interviewed for this episode are their own and do not necessarily reflect the views or positions of any entities they represent.

Why Can’t I Buy a Kidney?

Pushkin Industries — Tue, 31 Oct 2023 03:00:00 -0100

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 Bioethics

Mario Macis, Professor of Economic, Johns Hopkins Carey Business School

This 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.

Need a new Liver? Drinkers to the back of the Line.

Pushkin Industries — Tue, 24 Oct 2023 04:00:00 +0000

One day, when she was only 39, bar manager Jamie Imhof collapsed. While she lay in a coma, doctors told her family that they knew how to save her life: she needed an immediate liver transplant. But, transplant centers follow an informal “rule” when it comes to patients whose livers fail due to heavy alcohol use. Jamie would not be eligible for a new liver for six months. For a case as severe as Jamie’s, waiting six months would be a death sentence. We hear about the “six month rule” for liver transplants and why one Johns Hopkins surgeon says it’s a practice based on stigma, not science.

Show notes:
In addition to Jamie Imhof, this episode features interviews with:

Jeffrey Kahn, Andreas C. Dracopolous Director of the Johns Hopkins Berman Institute of Bioethics

Andrew Cameron, Surgeon-in-chief at Johns Hopkins Hospital, where Jamie had her surgery

If you or your loved one is struggling with alcohol use, visit the SAMHSA website to find help or call 1-800-662-HELP (4357).

The United Organ Transplant Service (UNOS) helps distribute organs for transplant across the country. You can read more about how livers are distributed at their website.

To learn more about Andrew Cameron’s program that challenges the six month rule, read this article from Hopkins Medicine Magazine.

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.

See omnystudio.com/listener for privacy information.

The Girl Who Died Twice

Pushkin Industries — Tue, 17 Oct 2023 04:00:00 +0000

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 University

Jeffrey Kahn, Andreas C. Dracopolous Director of the Johns Hopkins Berman Institute of Bioethics

Bob 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.

I Would’ve Let You Die, Too

Pushkin Industries — Tue, 10 Oct 2023 04:00:00 +0000

While Andrea Rubin lay unconscious and severely burned after a car fire, her father told doctors to do everything they could to keep her alive. She would need many surgeries. Her quality of life wouldn’t be the same. Her friends were outraged. They told doctors that Andrea would not want to live that way. While Andrea was being kept alive on a ventilator, her loved ones fought about what would be best for her. In this episode, we explore how medical decisions are made for patients who are incapable of deciding for themselves.

Show notes:
In addition to Andrea Rubin, this episode features interviews with:

Jeffrey Kahn, Andreas C. Dracopolous Director of the Johns Hopkins Berman Institute of Bioethics

Monica Gerrek, Co-director of the Center for Biomedical Ethics at MetroHealth System (where Andrea was treated)

You can learn more about Andrea’s case here.

A similar case to Andrea’s happened in the 1970s. A man named Dax Cowart repeatedly asked doctors to let him die after suffering severe burns. But the doctors continued to treat him against his wishes. Here’s an interview with Mr. Cowart ten years after his accident, where he talks about his experience with the Washington Post. Dr. Gerrek wrote a paper comparing the two cases, and showing how medical decision making for severe burn patients has evolved over the past 50 years.

For further reading about medical decision making and patient autonomy, 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.

Introducing: playing god?

Pushkin Industries — Tue, 26 Sep 2023 04:05:00 +0000

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.