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Bioethics Forum Essay

Bioethics in the Margins

A growing number of bioethicists support longstanding calls for increased diversity and inclusion in the field of bioethics. These calls include giving attention to topics and voices that are neglected in mainstream bioethics discourse and recognizing that bioethics has a role to play in promoting  health equity. We believe that bioethics  should direct more attention to advocating for under-resourced and vulnerable populations.

The RACE affinity group of the American Society for Bioethics and Humanities (ASBH) has been at the forefront of the efforts to broaden the scope of bioethics. Thanks to the leadership of Faith Fletcher and her successor, Jennifer James, and Jenny McCurdy, this diverse group meets regularly to exchange ideas and seek collegial guidance, and is actively engaged in multiple collaborative opportunities. (See this recent Hastings Bioethics Forum essay.)

One idea that came out of the RACE affinity group advisory board was the creation of a podcast. The aim was to address fundamental moral issues facing society that don’t get the attention they deserve, and to reach a wide audience. “Bioethics in the Margins” launched last September and has been released monthly since then  on Spotify and Stitcher, and Apple Podcasts.

Our inaugural podcast was with Ki Joo Choi, professor and chair of religion in Seton Hall University and author of Disciplined by Race: Theological Ethics and the Problem of Asian American Identity, for a discussion about the impact of Covid-19 on anti-Asian racism. Dr. Choi’s book lays a solid foundation for informing our understanding of this issue and provides great insights about the recent incidents of racism directed at the Asian-American-Pacific Islander population, a very diverse group encompassing 50 different ethnicities and speaking over 100 languages. The racism they have experienced is rooted in misconceptions about disease and immigration as well as resentment based on their success. During our discussion with Dr. Choi, we explore the complex associations that have given voice to the racism directed at AAPI populations and the role of churches in promoting social justice.

Our second guest was Arjun Byju, a medical student who discussed  “excited delirium,”  a questionable medical diagnosis often given as the cause of death of suspects subdued by the police, especially Black men. Byju has written thoughtfully about excited delirium, which is characterized by agitation, aggression, acute distress, and sudden death. He has not only drawn attention to arguments that this is not a legitimate clinical entity but has also raised concern that it reflects biases and cultural stereotypes and is often deployed as justification for violent subjugation of distressed and psychiatrically ill minorities. Our podcast explored the disturbing history of excited delirium and the ways in which the interests of weapons manufacturers and police intersect to support its endurance and acceptance. We also examined the role of the medical profession; while several medical organizations have spoken out against the diagnosis, the medical profession as a whole has not done enough to  discredit it.

Our third podcast was an interview with Jennifer James a well-known Black feminist scholar at the University of California, San Francisco, who researches the lived experience of people at the margins of research and biomedicine. Her thoughtful and compassionate work explores the intersection of race, gender, and health. Our discussion included the recently exposed forced sterilizations of women in California prisons and the implications for other reproductive rights for incarcerated women, how the corrections system intersects with the health care system to exacerbate serious and chronic illnesses of incarcerated people, and the role of health care providers in these environments.

Last month, we did a joint podcast with “Bioethics for  the  People,” where we discussed the top 10 most neglected topics in bioethics. They included immigration (#9), climate change (#3), gun violence (#2), and racism (#1). Other issues we believe are neglected in mainstream bioethics that we plan to explore are economic inequality, the death penalty, universal health care, and the opioid epidemic.

Our next podcast,  to be released on January 24th, centers on gender-affirming care. Our interview with Patrick Herron and Renee Reopell, who teach about and support nonbinary and gender diverse youth, covers a range of issues faced by transgender youth, including discrimination, disparities in all types of health care, and the prevalence of mental illness. The podcast also discusses the medical school curriculum that Dr. Herron and Reopell developed on gender-affirming care,  calling attention to ethical challenges that people face in making decisions about this care and lifting up the voices of these vulnerable patients.

The unprecedented experience of working remotely has been a great opportunity to collaborate  outside our institutions with people we have only met on Zoom. Kirk Johnson and Amelia Barwise serve as podcast hosts, and Nicolle Strand is the editor. We share a mission to highlight diverse voices and perspectives  to challenge assumptions about what bioethics can and should do during these divisive times marked by inequality in its many forms.

Our hope is that “Bioethics in the Margins” will be a resource for bioethics scholars and students  and for the general population. In academia, the podcast can help bioethicists recognize areas of inequality in their own community  and be a catalyst for restitution. For the general population, the podcast can be a conduit to accessible health literacy and education. We welcome suggestions for topics and guests. Please reach out to us at bioethicsinthemargins@gmail.com or @BEInTheMargins.    

Amelia Barwise, MB BCh BAO, PhD, is an assistant professor of medicine and biomedical ethics at Mayo Clinic, a research associate in the Division of Pulmonary and Critical Care Medicine and, affiliate faculty in the Bioethics Research Program at Mayo, Rochester, Minn. Kirk Johnson, PhD, (@Dr_KirkJ) is an assistant professor of justice studies and medical humanities at Montclair State University and a member of the bioethics committee at Overlook Medical Center in Summit, N.J. Nicolle Strand, JD, MBE, MPH, (@Nicolle_Strand) is an assistant professor in the Center for Urban Bioethics and the director for equity and culture initiatives at the Lewis Katz School of Medicine at Temple University. Elizabeth Chuang, MD, MPH,  (@dr_liz_chuang) is an associate professor of medicine, palliative care physician and research faculty at the Montefiore-Einstein Center for Bioethics, in Bronx, N.Y., focusing on disparities in end-of-life care.

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