I am an anthropologist of science and medicine interested in how social identities, health outcomes, and molecular genetic findings increasingly intersect. In my first book, The Enculturated Gene: Sickle Cell Health Politics and Biological Difference in West Africa (Princeton, 2011), I draw on over a decade of ethnographic fieldwork in the US, France and Senegal. By bringing the lives of people with sickle cell anemia together with how the science about them has been made, The Enculturated Gene weaves together postcolonial genetic science, the effects of structural adjustment on health resources, and patient activism between Senegal and France to show how African sickle cell has been ordered in ethnic-national terms at the level of the gene. This work is situated within a larger conversation on ethics, power, and the ways that human biological material, within the context of culture, is rarely apolitical. The Enculturated Gene has won the Royal Anthropological Institute’s 2011 Amaury Talbot Prize for the most valuable work of African Anthropology and the American Anthropological Association’s 2014 Robert B. Textor and Family Prize for Excellence in Anticipatory Anthropology.
Since 2003, I have also conducted multi-sited field research in the United States on emergent technologies that measure human genetic diversity among populations and between individuals. As an outgrowth of this research, I have become particularly interested in how scientists promote civic ideas of “genetic citizenship,” how they enlist participant involvement in specific disease research problems, and how they also contribute to social movements of historical reckoning. In its detail, this second book project explores how U.S. political concepts of diversity, usually glossed as “race,” function in genetic recruitment protocols and study designs for research on complex diseases, “tailored medicine,” ancestry tracing, and personal genomics. This project will also examine the fraught relationship between private property and personal privacy with regards to biogenetic data.
My work has been funded by the National Science Foundation, the Robert Wood Johnson Foundation, the Social Science Research Council, the Andrew and Florence White Fellows program in Medicine and the Humanities, the Ford Foundation, and the Wenner-Gren Foundation for Anthropological Research. I have also been an invited scholar at the Centre de Sociologie de l'Innovation in Paris (1997-1998, 2000 and 2002), a USIA Fulbright Scholar to Senegal, a fellow at the School of Social Science at the Institute for Advanced Study in Princeton (2004-2005), and a Robert Wood Johnson Health and Society Scholar at the Harvard School of Public Health (2005-2007). I recently completed a Scholars Award in NSF's Science & Society Program to research my second book called Tabula Raza: Mapping Race and Human Diversity in American Genome Science.
Professor Fullwiley joined Stanford as part of the Faculty Development Initiative in 2011.