This area of research investigates the social, political, and ethical dimensions of emergent biomedical technologies, the experts who create them, and the knowledge systems in which they are embedded.
Fields & Knowledge Production
This area of research examines how scientific fields form and develop and the politics of knowledge production.
Experience of Illness & Sociology of Diagnosis
This area of research explores how people live with illness, including how they navigate complex healthcare systems and their own pursuit of lay and biomedical knowledge.
I am interested in the ways that developments in science, medicine, and technology shape how we come to know and understand our bodies, identities, and difference. My research is situated at the intersection of medical sociology and science and technology studies (STS). It uses qualitative, ethnographic methods to investigate (1) how we develop models to produce knowledge about the body, health, and illness; and (2) how people sometimes accept and other times reject expert biomedical knowledge, and how interactions with scientific and medical structures and experts impact experiences of illness.
Organs on Chips: Modeling the Body in the Translational Era
In the wake of concerns about the translation from bench research to bedside therapies, new technologies, actors, and fields have come to the fore, offering new tools that illuminate the biotechnological imaginary that marks 21st century science. Organ chips, a group of these new tools, are microfluidic devices made to model human organs. The hype surrounding these technologies paints a desirable future: one in which non-human animals are no longer the requisite tools of biomedical research, pharmaceuticals are developed faster and at a lower cost, and people have access to therapeutics that are tailored to their personalized health needs. In a time when many aspects of biomedicine are being transformed, biotechnological advances are not only changing health care practices, they are also remaking biomedical research. This dissertation investigates our current moment in biomedicine in which the utility, value, and constitution of models long-used in biomedical research are being renegotiated.
Beyond BMI: Conceptualizing Health in the 'Obesity Epidemic'
Obesity has been at the forefront of the public health agenda in the United States since the late 1990s. Commonly considered a simple condition of excess for most of the 20th century, this project investigated how early obesity researchers legitimized obesity as an object of scientific inquiry in the late 20th century. Drawing on document analysis, in depth interviews with obesity researchers, and ethnographic observation, this project explains how the frame of complexity has been instrumental for obesity researchers carving out a legitimate area of scientific inquiry and expanding the research arena.
Findings from this project can be found in BioSocieties.
The Ethics of Inclusion: Diversity in Precision Medicine Research (2018 - )
PI: Sandra Soo-Jin Lee, PhD (Columbia University); MPI: Janet Shim, PhD (UCSF)
This project examines how goals around inclusion and diversity are enacted and operationalized in precision medicine research (PMR) in the US. Drawing on ethnographic observations of scientific activities and in-depth interviews with precision medicine research investigators and stakeholders of three PMR consortia, as well as document analysis, our team investigates how priorities for diversity and inclusion play out on the ground. Read more about the project here.
Other team members: Co-Is: Aliya Saperstein, PhD (Stanford University); Stephanie Malia Fullerton, DPhil (University of Washington); Research Staff: Emily Velasquez (Columbia University), Michael Bentz (Columbia University), Nicole Foti (UCSF), Melanie Jeske
Experience of Illness & Sociology of Diagnosis (2014-2018)
PI: Kelly Joyce, PhD (Drexel University)
Recent estimates suggest over 80 diseases are autoimmune illnesses or autoimmune related and effect over 50 million people living in the United States (AARDA 2017; Autoimmunity Institute). Autoimmune is a broad category of illnesses in which a person's immune system identifies healthy cells as pathological. Autoimmune diseases include well known illnesses such as celiac, lupus, multiple sclerosis, and type 1 diabetes, as well as lesser known diseases like Guillain-Barre syndrome, Hashimoto's thyroiditis, IgG1-related sclerosing disease, Crohn's, and mixed connective tissue disease. Moreover, autoimmune illnesses can be particularly difficult to diagnose, and receiving a "correct" diagnosis can take years. This project interviewed 45 people living with autoimmune illnesses to learn about living with complex, chronic illnesses marked by heterogeneity and uncertainty.
This project illuminated how people navigate their illness experiences and the strategies they develop to live well, and how broad and narrow diagnostic classifications perform different work in shaping the illness experience. Findings from this project can be found in Social Science and Medicine (Joyce and Jeske, 2020), Sociological Viewpoints (Joyce and Jeske, 2019). Together with Jennifer James, we extended our concept of regimes of patienthood in a 2020 article in Engaging Science, Technology, and Society.
Additionally, with an interdisciplinary team of clinical care and nursing scholars, I have also studied how youth living with HIV use technology to manage their care.
Header Photo: Château du Clos Lucé, Amboise France. Leonardo Da Vinci's home for the last three years of his life. Photo taken by M. Jeske.