UC Berkeley

The subject of the 2020 Nobel Prize in chemistry, the CRISPR-Cas9, has been heralded by researchers as a breakthrough biotechnology and has gained widespread use in biomedicine and the life sciences since the first publication that showed that the CRISPR-Cas9 system could be used as a tool for “editing” DNA sequences in 2012. With over 20 clinical trials for treating genetic diseases with genome-editing technologies underway, scientists, regulators, and patients continue to lag in addressing concerns over equity, racial justice, public health and ableism in biomedicine. This dissertation reframes concerns over the ethics of genome editing as a problem of institutionalization: How is the idea and discourse of genome editing rendered into a durable set of practices that become routine, legitimated and, ultimately, taken for granted? Methodologically I draw from participant observation, in-depth interviews, and archival research. From 2015 to 2019, I’ve conducted participant observation following the extended case method at sites ranging from laboratories in the San Francisco Bay Area, to conference halls in Hong Kong. By observing scientists across these sites, I trace the winding trajectory of scientific practices as they move from the laboratory to the clinic. I have supplemented these observations with in-depth interviews with over 60 researchers and regulators. To gain purchase on the broader context of these observational data, I have collected over 880 archival documents ranging from Twitter threads, news articles, and clinical trial registries. From these sources I unpack the discursive struggles being waged over the moral and technical basis of genome editing and piece together which stakeholders are involved and when. To describe processes of institutionalization, this project builds on past work in political sociology, science and technology studies (STS) and the sociology of organizations. Work at the intersection of these fields has analyzed the interplay between science and politics by tracing networks of actors and has identified mechanisms by which technologies are legitimated. I bridge these fields to develop a theory of institutionalization that centers the normative construction of technology. I describe how scientists produce new genome editing practices when managing technical, semantic, and regulatory uncertainty during the adoption of CRISPR technologies. These practices are then routinized and normalized in a way that affirms not only their epistemic contribution but also their moral value. For example, scientists used various metaphors, such as gene surgery, to bring these laboratory practices into the clinic. I further show how partnerships between academic laboratories and biopharmaceutical firms reify construction of genome editing as morally good. Ultimately, I argue that scientists shape the direction of genome editing by resisting the encroachment of regulatory bodies, co-opting bioethicists, and carefully drawing the boundaries of self-governance. While this has allowed them to establish discursive and practical autonomy, it has also left patient communities, disability justice advocates and civil society groups on the sidelines.