CURRENT & PAST PROJECTS
Humans and Organs on Chips: Translational Medicine & the Politics of Biomedical Innovation
In the wake of concerns about the translation from bench research to bedside therapies in biomedical research, 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 book project investigates our current moment in biomedicine in which the utility, value, and constitution of models long-used in biomedical research are being renegotiated.
The book follows the production of a group of emergent biomedical technologies, organ chips, and the upstream politics and investments that shape their trajectory. Through an analysis of the emergence and construction of organ chips, this work unpacks the social, political, and economic drivers that shape what kinds of research and technologies are pursued in the name of "translation." I show how organ chips engender particular ideas about what counts as being human and how ideas about social difference come to matter when developing biomedical models of the human body. Critically, this work examines new technologies while they are being developed-a unique and critical time for the social study of technologies. To date, related findings have been published in Engaging Science, Technology & Society and in an edited volume (Routledge, 2021).
Entanglements of Endometriosis
Endometriosis is a disease in which endometrial-like tissue grows outside the uterus on fallopian tubes, ovaries, and other regions, leading to immense pain, scarring, cysts, and potentially infertility. The National Institutes of Health estimates that one in ten females has endometriosis, and that 30-50% of people with endometriosis are infertile. Diagnosis of this condition typically takes years; many learn of this diagnosis while trying to achieve pregnancy or upon a ruptured cyst. In the US, endometriosis diagnoses in Black and Latinx populations is even longer delayed, reflective of longstanding health inequities and racism in medicine particularly around reproductive health. Despite an increase in awareness about endometriosis over the past decade, little is known about its causes or effective ways to diagnose and treat it. In recent years, however, new attention has been brought to the condition in popular media and in biomedical arenas. Moreover, prominent biomedical engineers have set sights on creating innovative models of the female reproductive system that better model diseases like endometriosis. Entanglements of Endometriosis is a muliti-year ethnographic study of how people navigate living with a chronic illness, endometriosis, and how researchers and clinicians produce knowledge about the condition.
This project weaves together analyses of how biomedical knowledge about endometriosis is produced in the lab alongside the experience of this illness within and outside of the clinic, so as to offer an ontological analysis of endometriosis from laboratory bench to through to the patient bedside and daily life. The project draws on in-depth interviews with endometriosis researchers and care providers, laboratory ethnography in labs studying endometriosis, observations in endometriosis clinics and scientific conferences, and in-depth interviews people living with endometriosis diagnosed in different life stages across varying racial, ethnic, and socioeconomic backgrounds.
Pandemic Science: The Disruptions to Laboratory Life Study
Following the closure of research laboratories during the COVID-19 pandemic, I conducted an interview-based study to understand how disruptions impacted lab workers. I conducted semi-structured, in-depth interviews with biomedical research trainees (advanced doctoral students and postdocs) who spend 70% or more of their daily work time (pre-pandemic) at the bench, over an 8-month time period. Initial interviews (T1) were conducted in September-October 2020 (n=39), approximately six months into the pandemic. Follow up interviews (T2) were conducted in February-March 2021 (n=36), approximately six months following the first interview. This second time point was approximately one year after early cases of COVID-19 were reported in the United States, and eleven months following widespread shut downs. This study documented workers' experience of disruptions and how the nature of scientific work itself -- that is, decisions around experimental design, research processes, and team science -- were changing in the wake of the pandemic. A manuscript based on this project (currently under review), shows that the "new normal" that emerged during the pandemic was marked by emergent stratifications and inequities in access to sufficient lab time, increased stress regarding productivity, and exacerbated frustrations with the culture of academic science. Combined with the working conditions, the loss of sociality in scientific work amplified existing social inequities in the workplace ultimately resulted in workers' estrangement from science itself.
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 - 2021)
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. In a first-authored paper from this project, we examine how calls to increase racial and ethnic diversity in genomic studies drives the inclusion of "diverse" staff in low-ranking positions on research teams. Offering empirical evidence from the multi-year ethnographic study, my co-authors and I show how the organizational and funding infrastructure of PMR, and genomics research more broadly, does not support equitable diversification of the workforce (under review). Typically located in low-ranking positions on research teams, potential contributions to scientific work are limited by roles on teams as well as the timing of when research staff are brought into the studies. As calls for workforce diversity resound in the genomics research community and in academic science more broadly, we contend that scientific teams and institutions must make equity a core value in order to meaningfully diversify scientific organizations and avoid reproduction of existing hierarchies. Additionally, I lead a paper with this team that investigates how measures of diversity are harmonized across PMR studies, in the pursuit of creating large-scale, commensurate datasets. Even in studies where increased diversity is mandated, we find that the harmonization of diversity measures, and social measures more generally, is often performative and "done on the side of everything else," a result of diversity work being underfunded and undervalued (under review).
Ethics of Inclusion Team members: Co-Is: Aliya Saperstein, PhD (Stanford University); Stephanie Malia Fullerton, DPhil (University of Washington); Research Staff: Emily Velasquez (University of Illinois Chicago), Michael Bentz (Columbia University), Nicole Foti (UCSF), Melanie Jeske
Experience of Illness & Sociology of Diagnosis
Sociologists have a rich history of studying the process of diagnosis and how people experience illness. Yet, the sociology of diagnosis and illness experience literatures have seldom been fully integrated. My research on the unequal experiences of illness integrates these literatures to theorize how diagnostic journeys shape the practices of patienthood. This collaborative work draws brings together scholars focused on different chronic illnesses in order to elucidate the social processes at play. The beginnings of this work were published in a 2023 article in Sociology of Health and Illness.
Experience of Autoimmune Illness
PI: Kelly Joyce, PhD (Drexel University, 2014-2018)
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, I have brought qualitative research expertise to interdisciplinary teams of clinical researchers and nursing scholars. On these teams, I have studied how youth living with HIV use technology to manage their care and how community hospitals implement quality improvement programs.
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.