The Logics of Consent: how organizations construct women's risks and responsibilities in prenatal testing

This dissertation is an ethnographic and qualitative study of how healthcare organizations/nconstruct and enact policies on the use of new prenatal technologies, and how such policies/nconstruct the context for patients’ decision-making. Specifically, it examines how the systems that/norganizations create for new technologies shape the roles of women in motherhood and pregnancy./nUsing qualitative methods, the dissertation examines how one private California healthcare/norganization constructed policies regarding a new prenatal genetic test: non-invasive prenatal/nscreening (NIPT) using cell free DNA.1 The rapid uptake of NIPT since 2013 has led to/norganizational upheaval as healthcare administrators struggle to categorize these new tests, which/nblends the ease of basic blood screening most women have been offered for years (just a blood/ndraw) with claims of diagnostic-level accuracy (99% for the condition of Down Syndrome),/nallowing women to forego an invasive procedure like amniocentesis. The study ethnographically/ntraces the process of policy creation and its impact on the ground by (1) observing how a policy/ncommittee dedicated to moving NIPT from a Genetics department at a regional healthcare/norganization to its Obstetrics department made new policies on NIPT use, and the (2) observing/nthe impact of these new NIPT policies on “the ground” at local Obstetrics clinics./nLittle research has examined the process of policy-making for patient education. This study builds/non literature on the constitutive nature of law and policy (Sarat and Kearns 1993) to show how/norganizational policies can constitute what technology means: the roles, responsibilities and/nidentities of organizational personnel and those who use their services (e.g. women who are/npregnant). More than simply processing patients who come through the door, organizational/npolicies, like law, redefine who patients are, and what they experience both empirically and/nnormatively. This dissertation studies how in this process institutional logics construct new risks/nand responsibilities for women while pregnant./n1 NIPT claims to isolate a fetus’s DNA from its mother’s blood, allowing testing platforms to search for indications/nthe fetus has an abnormal chromosome./niii/nTracing the policy formation-to-implementation process shows: 1) how actors in organizations/nused various institutional logics to negotiate the meaning of new technologies in policies, practices,/nand routines; and 2) how the logics that organizational actors use construct the social meanings of/npatient education, patient autonomy, and the purpose of NIPT use. During the organizational/ntransition from the Genetics Department to Obstetrics Department, informed consent for NIPT was/ndecoupled from its intended aims as envisioned in bio- and medical-ethics, and as it had formerly/nbeen implemented in the Genetics Department. This dissertation argues that decoupling happened/nbecause of a change in institutional logics when NIPT use moved between departments. When the/nlogic changed, patient needs, interests, and identity were conceptualized around different frames/nof motherhood. The encompassing changes in how the new NIPT system was constructed shed/nlight on why it matters which logic is used in organizational policy-making: the resources and/ncare available to women change as a result of how their needs and responsibilities are/nconceptualized.

Advisor: Albiston, Catherine