Santiago Molina |  |
My dissertation, How Science Produces Institutions: The Practice and Politics of Genome Editing, examines the social, scientific, and political struggles being waged over the revolutionary genome-editing technology CRISPR-Cas9. With over 20 clinical trials for treating genetic diseases with CRISPR underway, stakeholders continue to debate issues of equity, racial justice, ethics, and ableism surrounding the modification of human DNA. I reframe these struggles theoretically as a problem of institutionalization: How is the idea and discourse of genome editing rendered into a durable set of practices that become legitimated and taken for granted? To answer this question, I draw from participant observation, in-depth interviews, and archival research to trace the trajectory of scientific practices as they move from the laboratory to the clinic and interrogate the sites at which decisions are made about the ethics, safety, and priorities of genome editing.
This line of inquiry is motivated, at its core, by the work of Troy Duster. Duster argued that genetic technologies and genetic ways of thinking about health, illness, and human difference have become increasingly ideologically penetrant since the mid-20th century. Following Duster’s theoretical framework of the prism of heritability, my research examines the justifications and moral imperatives behind scientists’ efforts to make modifying your DNA and your children’s DNA a widespread practice.
The theory of institutionalization I have begun to outline provides a framework for thinking about how a morally controversial practice, in this case modifying human DNA, can become normalized. This theory has three main antecedents: First, I draw from the interactionist theory of institutionalization developed by Peter L. Berger and Thomas Luckmann, as well as, the organizational insights of New Institutionalism. Their insights help me analyze how scientists, regulators and clinicians arrive at a shared vocabulary for talking about genome editing in specific situations and then inscribe this vocabulary in standard operating protocols, technical glossaries and formal guidelines. Second, I build on work at the intersection of political sociology and sociology science to trace networks of actors and identify the social mechanisms underlying power struggles in the field of genome editing. Last, the theory is underscored by the ideas of Michel Foucault and Georges Canguilhem, who drew attention to how people’s bodies are the site at which normalcy and normativity are reconfigured.
I bridge these three antecedents to explore institutionalization as a reciprocal process that occurs iteratively at the site of interaction between different kinds of actors. In the case of CRISPR, I find that scientists concentrate decision-making power through interactions with biopharmaceutical firms and regulators, ultimately allowing genome editing practices and the discourse surrounding them to become normative and acquire permanence in society. This realization of the prism of heritability has immediate implications for patient communities of rare genetic diseases; for example, sickle-cell anemia patients have raised the concern that they will bear the burden of risk in experimental treatments for therapies that will ultimately be unaffordable to their communities. However, the normalization of genome editing also has broader implications as scientists target genes involved in diseases with complex social etiologies like asthma, heart disease, and diabetes. Ultimately my work suggests that if more different voices (e.g. patients, their families, nurses, disability justice advocates, health disparities researchers, social scientists and scientists in training) are not included in shaping genome editing, then the risk is high that CRISPR will reproduce health inequities.
Santiago J. Molina (he/they) is a PhD candidate in the department of sociology at UC Berkeley and will be joining Northwestern University as a postdoctoral fellow in the Science in Human Culture Program in the Fall 2021. Molina’s research broadly seeks to understand the relationship between the production of knowledge and the production of social order, and the ways in which the bodies and tissues of Black, Indigenous, and other people of color are recruited into this production.
The theory of institutionalization I have begun to outline provides a framework for thinking about how a morally controversial practice, in this case modifying human DNA, can become normalized. This theory has three main antecedents: First, I draw from the interactionist theory of institutionalization developed by Peter L. Berger and Thomas Luckmann, as well as, the organizational insights of New Institutionalism. Their insights help me analyze how scientists, regulators and clinicians arrive at a shared vocabulary for talking about genome editing in specific situations and then inscribe this vocabulary in standard operating protocols, technical glossaries and formal guidelines. Second, I build on work at the intersection of political sociology and sociology science to trace networks of actors and identify the social mechanisms underlying power struggles in the field of genome editing. Last, the theory is underscored by the ideas of Michel Foucault and Georges Canguilhem, who drew attention to how people’s bodies are the site at which normalcy and normativity are reconfigured.
I bridge these three antecedents to explore institutionalization as a reciprocal process that occurs iteratively at the site of interaction between different kinds of actors. In the case of CRISPR, I find that scientists concentrate decision-making power through interactions with biopharmaceutical firms and regulators, ultimately allowing genome editing practices and the discourse surrounding them to become normative and acquire permanence in society. This realization of the prism of heritability has immediate implications for patient communities of rare genetic diseases; for example, sickle-cell anemia patients have raised the concern that they will bear the burden of risk in experimental treatments for therapies that will ultimately be unaffordable to their communities. However, the normalization of genome editing also has broader implications as scientists target genes involved in diseases with complex social etiologies like asthma, heart disease, and diabetes. Ultimately my work suggests that if more different voices (e.g. patients, their families, nurses, disability justice advocates, health disparities researchers, social scientists and scientists in training) are not included in shaping genome editing, then the risk is high that CRISPR will reproduce health inequities.
Santiago J. Molina (he/they) is a PhD candidate in the department of sociology at UC Berkeley and will be joining Northwestern University as a postdoctoral fellow in the Science in Human Culture Program in the Fall 2021. Molina’s research broadly seeks to understand the relationship between the production of knowledge and the production of social order, and the ways in which the bodies and tissues of Black, Indigenous, and other people of color are recruited into this production.
RSS Feed
