2023 Discussions
(This series is approved for 1.5 hours of CME credit)
- Nov 29: “Living with Disabilities in Rural Utah”
- Oct 25: "About Us, With Us: Genetic Policy Discussions in the Signing Deaf Community"
- Sept 27: "Crip Poetry and Performing the Principles of Medical Ethics"
- Aug 30: “Disability Justice and Transformative Justice”
- Mar 30: “Do Some Reasons Matter More Than Others? Religion and Other Forms of Belief in Pediatric Decision Making”
- Jan 17: "Genetic Testing and Reproductive Technologies Post-Dobbs"
Details
Disability & Healthcare
“Living with Disabilities in Rural Utah”
with: Gretchen Case, PhD, MA
Over two years, a team of medical students from the TRUE (Tribal, Rural, and Urban Underserved Medical Education) Program at the School of Medicine travelled around rural and remote Utah to interview persons with disabilities and their families about access to health care and their lived experiences. Led by faculty member Gretchen Case and accompanied by videographer Mars Jacobsen, the team filmed interviews with individuals and families from all over the state. From this interview footage, they created a short video intended to bring attention to the needs of people with disabilities outside of major urban centers. To begin this discussion, we will watch the short video and hear from Dr. Case as well as participating students, many of whom continue to work on research and education initiatives inspired by this project, including: James Carrington, Mira Reynolds, and Karishma Shah.
This project was generously supported by a grant from the Utah Developmental Disabilities Council, a state agency created to advocate for, and strengthen leadership skills in, individuals with disabilities and their families.
Genetics Hot Topics
"About Us, With Us: Genetic Policy Discussions in the Signing Deaf Community"
with: Teresa Blankmeyer Burke, PhD
Teresa Blankmeyer Burke is Professor of Philosophy and Director of the School of Arts & Humanities at Gallaudet University, a bilingual university that uses American Sign Language and English to serve deaf, hard of hearing, and hearing students in Washington DC. She is the only signing Deaf philosopher in the world with a doctorate in philosophy. Her publications cover a wide range of genres, including peer-reviewed scholarship in philosophy, bioethics, policy, and signed language interpreting ethics. She has also written for the general public, including mainstream media publications, creative nonfiction, and poetry in both American Sign Language and English. Dr. Burke has served on a number of national and international committees for a variety of organizations, including the United Nations, World Federation of the Deaf, the American Philosophical Association, the Hearing Loss Association of America, and the National Association of the Deaf (USA).
“Nothing about us, without us” is a disability rights slogan that captures the longstanding tension between bioethicists and disability activists. Despite the right to communication access, policy discussions with the potential to impact Deaf individuals often exclude Deaf experts due to logistical barriers that are overlooked in the planning process, further exacerbating the tension. Genetic technologies such as CRISPR pose an existential threat to the signing Deaf community, yet the signing Deaf community has been absent from many of the discussions leading to reports and policy recommendations. This paper sketches out some of the features of the existential threat for this minority language community, identifies some of the existing infrastructure barriers, and offers recommendations for a radical inclusion of Deaf-centric perspectives for future work on this topic.
"Crip Poetry and Performing the Principles of Medical Ethics"
with: Jim Ferris, PhD
Disability scholar and writer Jim Ferris presents a provocative perspective on how to enact autonomy, beneficence, non-maleficence, and justice. He'll discuss how the characteristics of "crip poetry"--written by and about bodies labeled "abnormal"--align with the principles of medical ethics, showing health-care professionals how essential it is to challenge stereotypes, foreground atypical perspectives, and emphasize embodiment by being aware of the centrality of the body in all our lives.
BACKGROUND READINGS
- Poems by Jim Ferris: From the Surgeons: Drs. Sofield, Louis, Hark, Alfini, Millar, Baehr, Bevan-Thomas, Tsatsos, Ericson, and Bennan & Why Crip Poetry
- Ferris. (2006). Crip Poetry, or How I Learned to Love the Limp. Wordgathering: A Journal of Disability Poetry and Literature, 1(2), Essays.
"Disability Justice and Transformative Justice”
with: Audrey Yap, PhD
Dr. Yap will discuss connections between disability justice, institutionalization, and mass incarceration, as well the response from abolitionists about proposed solutions. Her presentation will also have implications for cross-movement solidarity and what it might mean to be anti-oppressive in an academic setting.
“Do Some Reasons Matter More Than Others? Religion and Other Forms of Belief in Pediatric Decision Making”
with: Amy Caruso Brown, MD, MSc, MSCS
Amy Caruso Brown, MD, MSc, MSCS, is an Associate Professor of Bioethics and Humanities and of Pediatrics. Dr. Caruso Brown is board certified in general pediatrics, pediatric hematology/oncology and is a certified health care ethics consultant (HEC-C). She currently serves as the Interim Chair of Bioethics and Humanities at SUNY Upstate Medical University where she is a member of the ethics committee.
Dr. Caruso Brown has invited us to read the short article below in preparation for our discussion, which may cover such questions as: How and when do parental reasons for refusal of care or demands for care matter? Should the ethical bar to override parental decisions be lower than the legal one? What level of harm is significant if the outcomes won’t be known for years?
BACKGROUND READING:
Gillam. (2016). The zone of parental discretion: An ethical tool for dealing with disagreement between parents and doctors about medical treatment for a child. Clinical Ethics., 11(1), 1–8. https://doi.org/10.1177/1477750915622033
This event is sponsored by the Center for Health Ethics, Arts, and Humanities in collaboration with the Department of Pediatrics
GENETICS HOT TOPICS:
"Genetic Testing and Reproductive Technologies Post-Dobbs"
with: Jeff Botkin, MD, MPH
Prenatal diagnosis has been available for pregnant couples and those planning a pregnancy since the 1960’s. A variety of tools are in routine use and can be applied to fertilized eggs in the laboratory through to the time of birth. Traditionally, these tools have been used by parents and professionals for a variety of reasons. The Roe vs. Wade decision by the US Supreme Court allowed states to restrict access to abortion after the time of viability, whether the abortion was sought for “fetal indications” or for a desire not to bear a child. The Dobbs decision in 2022 now permits states wide authority to restrict abortion for any indication throughout the course of pregnancy.
This discussion will review the traditional justifications for prenatal diagnosis, the current tools available, and the impact the Dobbs decision may have on the ability of individuals to use prenatal diagnosis and respond to the information obtained with these technologies.
BACKGROUND READINGS:
- Curley, B. (2022, June 30). Genetic testing: Roe v Wade ruling limits benefits. Healthline. Retrieved January 11, 2023, from https://www.healthline.com/health-news/how-the-roe-v-wade-decision-impacts-genetic-testing
- Parens, E., & Asch, A. (1999). Special supplement: The disability rights critique of prenatal genetic testing reflections and recommendations. The Hastings Center Report, 29(5). https://doi.org/10.2307/3527746
This event is sponsored by the Center for Health Ethics, Arts, and Humanities in collaboration with UCEER