Sickle Cells to Super Cells: The Alluring Genetic Cure for Sickle Cell Disease

My book project traces the rise of gene therapy as a curative frontier for sickle cell disease, exploring how scientific hope, structural inequality, and lived experience converge in the pursuit of genetic cures. Drawing on ethnographic interviews, historical analysis, and stakeholder engagement, Sickle Cells to Super Cells examines how patients, families, clinicians, and researchers navigate the promises and limits of biomedical innovation.

The book engages critical questions at the intersection of sociology, bioethics, and science and technology studies: What does it mean to be cured? Who defines cure, and who is excluded from it? And how do racialized histories of pain, neglect, and resilience shape contemporary visions of progress?

Blending narrative, theory, and critique, this work calls for a more accountable, patient-centered approach to translational medicine - one that attends to both the allure and aftermath of cure.

How do patients experience promise? What does justice look like at the genetic frontier?

I examine the ethical, legal, and social implications (ELSI) of biomedical innovation, with a focus on gene and cell therapies for sickle cell disease. My work explores how communities make sense of “cure,” how institutions narrate risk, and what equitable access really requires. These questions animate my research across NIH-funded studies and qualitative interviews with patients, caregivers, and clinicians.

Projects in this area include:

• A multi-year qualitative study on patient perceptions of cell and gene therapies for sickle cell disease

• A conceptual analysis of current discourse of therapeutic development in biomedicine

• A framework for integrating lived experience into genomic trial design

What shapes the path from discovery to delivery - and who gets left behind?

I study how scientific innovations move from lab to clinic to public discourse, tracing how narratives of hope, urgency, and scarcity shape translational research. My work draws from sociology of science, critical bioethics, and medical anthropology to examine how expectations are built, how inequities are embedded, and how power circulates through the process of innovation.

This strand includes historical and contemporary analysis of precision medicine, stakeholder engagement practices, and translational ethics.

What happens when beauty and medicine blur?

This strand explores the sociocultural and ethical dimensions of aesthetic medicine, from elective skin lightening to cosmetic injectables. I ask how race, gender, and class shape the pursuit of wellness and bodily transformation. Using a mix of ethnography and cultural analysis, I explore the evolving boundaries between health, beauty, and self-fashioning.

How can research be both interdisciplinary and community-driven?

My interdisciplinary work is grounded in long-term relationships with patients, clinicians, and advocacy organizations. I use stakeholder engagement, community advisory boards, and qualitative methods to co-produce research that reflects community priorities and builds institutional accountability.

Current collaborations include:

• Membership on a National Academies of Science, Engineering, and Medicine study

• Creating gene therapy education materials for individuals with sickle cell disease

I also contribute to interdisciplinary projects focused on health disparities and equity more broadly, including studies on racial differences in suicide, the dynamics of medical mistrust, and public health promotion initiatives.