I am a PhD candidate in Anthropology at the University of Massachusetts Amherst. My research examines how narratives shape experience in the context of disability, genetics, and emerging technologies.
I'm embedded in the Fragile X community as a carrier with 20 years of community access, trained in biosocial anthropology and disability studies, and working as a public anthropologist through platforms like TikTok (@professor_xtra). This positions me to bridge community expertise and technology design—particularly in understanding how AI systems mediate healthcare for underserved populations.
When I'm not doing research, I practice Pilates, create arts-based research (drawing and comics), and write.
Research
Dissertation: Family Experiences of Fragile X Syndrome
My dissertation investigates how families create counter-narratives that resist genetic determinism and recognize the complex interplay between biology, environment, and social belonging. Through focus groups across eight U.S. regions, I'm documenting what families know that biomedicine fails to capture—applying a strengths-based approach to understand resilience, joy, and capability.
Proposed Research: AI in Rare Disease Healthcare
I'm proposing qualitative research on how AI chatbots are transforming patient-clinician relationships in rare disease communities. Working with the Fragile X Program at Boston Children's Hospital, I would examine how families and doctors negotiate AI-generated health information—documenting process to inform participatory technology design.
Research Interests
- Medical anthropology of emerging technologies
- AI tools in healthcare settings and clinical decision-making
- Participatory design with genetic condition communities
- Biosocial anthropology and disability studies
- Ethnographic and mixed methods research
Publications & Presentations
DeVane, C. (forthcoming 2026). "The Strange Mirror: Medical Storytelling as a Fragile X Carrier on TikTok." Narrative Inquiry in Bioethics.
"From 'Bad X' to Counter-Narratives: How Families with Fragile X Resist Genetic Determinism" (April 2026). Paper presentation, Yale Symposium on Disability and Accessibility.
"Sexual Violence in Buddhism: Centering Survivors' Voices" (November 2024). Panel discussant, Heartwood-Northwestern Symposium, Northwestern University.
DeVane, C. (2021). "The Inheritance by Elizabeth Povinelli." EuropeNow, 42.
Contact
I'm currently seeking opportunities in applied anthropological research, particularly at the intersection of AI, healthcare, and underserved communities.