Genomics, NFL Players, and Public Health with Chelsey Carter

Why is public health struggling to make its technologies good?

In this episode, Yale public health scholar and medical anthropologist Chelsey R. Carter joins Eleanor Drage to explore the technologies of public health. They discuss how eye-gaze devices can help people with amyotrophic lateral sclerosis (ALS) communicate, and why assistive technology can fail when users don’t receive the training and support they need. Chelsey also tells us about racial bias in neurological care that National Football League (NFL) players receive after injuries, and shares how the Black Genome Project approaches representation and lived experience in genomics. From COVID-19 and public health policy to precision medicine and the ethics of health technology, this conversation asks who benefits from innovation, and what it takes to make healthcare more equitable. Essential listening for anyone interested in disability justice, Black health, medical anthropology, health equity, and the relationship between technology, race, and care.

Reading List:

• Chelsey’s website
• The Difference of Black ALS Anti-Bodies for Survival
• Weathering Anti-Blackness
• Priorities and Recommendations to Make ALS a Livable Disease Emanating from the 2024 National Academies of Sciences, Engineering, and Medicine Report Living with ALS
• Are diverse databases actually creating equity in genomics?
• Hope tempered by caution: Public beliefs in the United States about the benefits and drawbacks of using epigenetic technologies in clinical care.
• Interpersonal associations in mental health outcomes of people living with ALS, caregivers, and dyads: Implications for the role of clinicians
• Examining relationships between multifactorial health beliefs and beliefs about the social implications of genetics
• The Difference of Black ALS Anti‐Bodies for Survival
• Anti‐Bodies, Anti‐Body: A Black Feminist Call and Response: Introduction
• St. Louis enhancing engagement and retention (STEER) in HIV/AIDS care: a participatory intersectional needs assessment for intervention and implementation planning
• Strengthening the US Health Workforce to End the HIV Epidemic: Lessons Learned From 11 EHE Jurisdictions
• Patients as knowledge partners in the context of complex chronic conditions
• Qualitative and Mixed Methods Research in Cardiovascular Care: Opportunities in the Coming Decades
• Psychological distress and life satisfaction among Black working adults in the U.S. during the COVID-19 pandemic
• Past Is Prologue: Dismantling Colonial Legacies to Advance Black Health Equity in the United States
• “They need people to actually show up in their lives:” deploying community health workers to improve mental health and substance use outcomes among PLWH
• The Weather of Anti-Blackness: Is Health Equity Enough?
• Inclusive Recruitment Strategies to Maximize Sociodemographic Diversity among Participants: A St. Louis Case Study
• Gaslighting: ALS, anti‐Blackness, and medicine

Edited by: Meibel Dabodabo