“I Heard It’s Not Common in Black People”: Race, Bias, and Ethical Considerations for ALS Research and Care
May 31, 2023
Noon-1:00 p.m.
Room C2860
(Anesthesia Library, 2nd floor BMR Buiding)
Our scientific and cultural understandings of ALS (amyotrophic lateral sclerosis) and race are unclear. How do race and bias influence the experience of living with the neurodegenerative disease ALS? To engage this question, this talk reveals how Black Americans living with ALS in the United States experience ALS diagnoses, treatment, and care. Black people with ALS often go undiagnosed (or are misdiagnosed), are less likely to participate in ALS clinical trials, and die from ALS faster after symptom onset. This reality leads to increased suffering, lack of symptom treatment and palliative care, and ultimately premature death. The talk establishes how bias has harmful biological effects and how anti-Black racism gets “under the skin” for a complicated disease like ALS, which is often perceived as not producing health disparities. This talk introduces health omissions as a necessary nuance to our understanding of health disparities and urges the medical community to pay closer attention to non-white patients in the ALS landscape.
Presented by: Chelsey Carter, M.P.H., Ph.D.
Assistant Professor, Department of Social and Behavioral Sciences, Yale School of Public Health
Dr. Carter is an anthropologist of medicine, public health, and race. Dr. Carter is an Assistant Professor of Public Health in the Department of Social and Behavioral Sciences at Yale School of Public Health. Dr. Carter’s research program examines how racialized scientific knowledge and systemic marginalization impact Black Americans with neurodegenerative diseases like ALS. Her first book project, Finding the Forgotten: Race, Bias, and Care in the World of ALS, is an ethnographic examination study of the experiences of Black Americans living with ALS and how they are impacted by race, gender, class, and bias. Her forthcoming research projects investigate caregiving in ALS communities and genomic medicine targeted toward Black Americans. Dr. Carter’s scholarship has been funded by the National Science Foundation (NSF), the Andrew Mellon Foundation, the Wenner Gren Foundation, the Ford Foundation, the ALS Association, and more. Her public and scholarly work has been published in Scientific American, Museum Anthropology, American Ethnologist, Journal for the Anthropology of North America, Medical Anthropology Quarterly and more.
CME credits are available for Penn State Health and College of Medicine employees:
Penn State College of Medicine is accredited by the Accreditation Council for Continuing Medical Education (ACCME) to provide continuing medical education for physicians.
Penn State College of Medicine designates this live activity for a maximum of 1.25 AMA PRA Category 1 Credit(s)™. Physicians should claim only the credit commensurate with the extent of
their participation in the activity.
This lecture is free and open to the public. It will take place simultaneously in person in Room C3860 (500 University Drive, Hershey, PA) and via Zoo; psu.zoom.us/j/98589079983 Passcode: 376147.) CME credits are available for Penn State Health and College of Medicine employees.
For more information email humanities@pennstatehealth.psu.edu or Priscilla Song, PhD.