Shifting Ground: Sociotechnical change and conflict over newborn HIV testing programs

• In Event: Science, Knowledge & Technology Section Roundtables
  In Refereed Roundtable (60 minute): Table 6: Lay Expertise and Boundary Work

Abstract

HIV testing is a critical case for the study of health technology. Testing technologies have wide-reaching implications, both as clinical tools and as the object that marks someone with a particular condition. HIV testing exemplifies this dual potential, acting both as link to care and the source of a stigma. The 1985 arrival of HIV testing technology spurred a long history of contentious debate over its appropriate use. This history is especially interesting because the adoption of HIV testing has been both closely tied to major institutional actors and subject to strong activist influence.In this paper, I examine, first, how a once-accepted public health practice, routine newborn testing, was made controversial. Second, I examine how—and why—the state and civil society contest the use of HIV testing in public health surveillance practices. Using historical archival methods, I trace the history of routine newborn testing in the state of New York, a program using near-universally collected heel-stick blood samples taken from infants born in hospitals to estimate HIV seroprevalence in childbearing women. This study combines a range of data from primary sources comprising newspaper articles, legal codes and regulatory documents, legislative records, public health agency publications, academic publications in law and public health, and oral histories to secondary academic literature. While the emergence of controversy over this program is often attributed to the moral entrepreneurship of state political figures, I find that the shifting sociotechnical networks that structure HIV care themselves changed the stakes of the program. This transformation, itself a product of successful activist encounters with the state, altered the imaginaries surrounding HIV test, opening the practice for debate on new terms.

Author

• Emma Josephine Menardi, Princeton University