Bioethics in the Margins

Kirk Johnson and Amelia Barwise
  • 5.0 (6)
  • PHILOSOPHY
  • UPDATED MONTHLY
Bioethics in the Margins

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 represent our employers, institutions, or professional societies. Mission: Bioethics in the Margins aims to include topics, guests and audiences who are not always highlighted in mainstream bioethics discourse. We will focus on structural inequity and the role bioethics can play in social change. We aim to move beyond traditional bioethics frameworks and intentionally draw on intersectionality, social justice, racial justice, disability ethics, women, LGBTQ ethics, and topics specific to Black, immigrant/refugee, Native American, Latinx populations. Hosts: Kirk Johnson, Amelia Barwise Team Members: Gargi Pandey, Creative Director; Madeline Mahoney, Sound Editor; Wendy Jiang, Social Media Manager; Nicolle Strand, Advisor; Liz Chuang, Producer

  1. JAN 28

    Centering Reproductive Health of Black Women with Sickle Cell Disease with Dr. Shameka Poetry Thomas

    Dr. Shameka Poetry Thomas is a medical sociologist with special interest in reproductive justice and genetics technology as well as the intersection of maternal healthcare with sickle cell disease. After receiving her Ph.D. from the University of Miami, she completed her two-year postdoctoral fellowship at the National Institutes of Health (NIH)/National Human Genomics Research Institutes (NHGRI). In this episode, Dr. Thomas centers the experiences of pregnant Black women with sickle cell disease, who, despite advances in medicine, genetics and reproductive technology, have been neglected by research communities due to intersecting marginalized identities despite high mortality during pregnancy and childbirth. Dr. Thomas walks us through what non-invasive prenatal testing (NIPT) is and how it relates to sickle cell disease specifically. Her work comes to life by illustrating the converging effects of colonialism, racism, bias and stigmatization through moving real-world stories. Her research sheds light on the lived experiences of patients who are left to integrate complex information from multiple specialists to interpret meanings for themselves, their families, their finances and their communities in the setting of collective and individual trauma. She describes the importance of using qualitative research methods to explore a range of experiences within groups rather than treating groups as a monolith. She also acknowledges the heaviness of this type of qualitative work and the importance of dissemination of findings to spark action. Dr. Thomas connected the long history of research abuses in the US to current-day research practices that continue to disrespect Black women. For example, recent sickle cell disease NIPT research was conducted without incorporating the unique lived experiences of the affected women to understand whether and how to incorporate these technologies into practice. She emphasized the urgent need for the development and implementation of more comprehensive ethical guidelines in the field of reproductive health. These guidelines should specifically address the ethical dimensions of research on sickle cell disease and the burgeoning field of genetic technology, ensuring that the rights, dignity, and well-being of those affected particularly within marginalized communities. Finally, Dr. Thomas called for more robust advocacy efforts aimed at amplifying the voices of Black women and other marginalized groups in the creation of healthcare policies and research priorities. Such advocacy must not only challenge existing inequities but also ensure that affected communities have the power and agency to influence decisions that impact their lives, fostering a healthcare system that is equitable, inclusive, and just. Read Dr. Thomas's work here: Thomas SP, Fletcher FE, Willard R, Ranson TM, Bonham VL. Patient Perceptions on the Advancement of Noninvasive Prenatal Testing for Sickle Cell Disease among Black Women in the United States. AJOB Empir Bioeth. 2024 Apr-Jun;15(2):154-163. doi: 10.1080/23294515.2024.2302996. Epub 2024 Feb 13. PMID: 38349128. Thomas SP. Trust Also Means Centering Black Women's Reproductive Health Narratives. Hastings Cent Rep. 2022 Mar;52 Suppl 1:S18-S21. doi: 10.1002/hast.1362. PMID: 35470876. Fletcher F, Thomas SP, Lapite FC, Ray K. Bioethics Must Exemplify a Clear Path toward Justice: A Call to Action. Am J Bioeth. 2022 Jan;22(1):14-16. doi: 10.1080/15265161.2021.2001113. PMID: 34962203; PMCID: PMC9302876.

    58 min

  2. 12/24/2024

    Diversification of Bioethics with Donald Carter

    Happy holidays from BITM! We are delighted to share this episode with you this week. Kirk and Amelia sat down with Dr. Donald Carter III, assistant professor at Mercer School of Medicine. Dr. Carter earned his Doctorate in Bioethics from Loyola University after earning a Masters in Divinity from Vanderbilt and an MBA from Tennessee State. He is a Sadler Scholar with the Hastings Center and the co-chair of the Race and Culture and Ethnicity (RACE) affinity group of the American Society for Bioethics and Humanities (ASBH). Dr. Carter began his career as a musician after earning a BA in music from Fisk University, one of the many Historically Black Colleges and Universities (HBCUs) in the United States. This episode is a great one for those who are curious about pursuing a career in Bioethics. Dr. Carter shared how he explored several career paths before ultimately finding his professional home in Bioethics. Dr. Carted discussed his work exploring the impacts of the 1910 Flexner report, which, while contributing to creating uniform standards for medical education, also resulted in the closing of 5 of the 7 medical schools within HBCUs. This is one of the reasons for the shortage of Black physicians that persists today. He discussed the importance of diversifying the field of Bioethics and the positive changes he has observed within ASBH over the past few years. He shared how he views HBCUs as an important resource to tap to help diversify the field. He recommends building up bioethics education at HBCUs as a way of fostering lasting change. He also discussed the importance of humanities in medical education, sharing his experiences using visual training strategies (VTS) in medical education, reminding us that the arts have a way of returning us to a place where we can see each other as full humans again. Dr. Carter pointed out that one of the superpowers of the field of Bioethics is that we have a large tent. He examined specific ways in which racial, cultural and professional diversity can enhance the value our field brings to patients and communities.

    41 min

  3. 11/27/2024

    Understanding and Responding to Book Bans with Laureen Cantwell-Jurkovic

    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

    58 min

  4. 10/30/2024

    Immigrant Health and the Work of Bioethics with Dr. Brian Tuohy

    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.

    42 min

  5. 07/15/2024

    Bodily Autonomy, Reproductive Justice, and Tear Gas with Asha Hassan

    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.

    43 min

  6. 06/18/2024

    Medical-Legal Partnerships and Social Determinants of Health with Lynette Martins

    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

    49 min

  7. 05/06/2024

    Racial Inequities, Shared Decision-Making, and Trauma-Informed Critical Care with Dr. Deepshikha Ashana

    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

    39 min

  8. 04/08/2024

    Nonprofit Healthcare, Virtue, and Mission with Dr. Mark Kuczewski

    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

    54 min
See All (31)

Ratings & Reviews

5
out of 5
6 Ratings

About

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 represent our employers, institutions, or professional societies. Mission: Bioethics in the Margins aims to include topics, guests and audiences who are not always highlighted in mainstream bioethics discourse. We will focus on structural inequity and the role bioethics can play in social change. We aim to move beyond traditional bioethics frameworks and intentionally draw on intersectionality, social justice, racial justice, disability ethics, women, LGBTQ ethics, and topics specific to Black, immigrant/refugee, Native American, Latinx populations. Hosts: Kirk Johnson, Amelia Barwise Team Members: Gargi Pandey, Creative Director; Madeline Mahoney, Sound Editor; Wendy Jiang, Social Media Manager; Nicolle Strand, Advisor; Liz Chuang, Producer

Information

  • Creator
    Kirk Johnson and Amelia Barwise
  • Years Active
    2021 - 2025
  • Episodes
    31
  • Rating
    Clean
  • Copyright
    © Elizabeth Chuang 2021
  • Show Website
    Bioethics in the Margins

You Might Also Like

To listen to explicit episodes, sign in.

Stay up to date with this show

Sign in or sign up to follow shows, save episodes, and get the latest updates.
Select a country or region

Africa, Middle East, and India

Asia Pacific

Europe

Latin America and the Caribbean

The United States and Canada