Skip to main content
eScholarship
Open Access Publications from the University of California

UC Berkeley

UC Berkeley Electronic Theses and Dissertations bannerUC Berkeley

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

  • Author(s): Parham, Lindsay;
  • Advisor(s): Albiston, Catherine;
  • et al.
Abstract

This dissertation is an ethnographic and qualitative study of how healthcare organizations

construct and enact policies on the use of new prenatal technologies, and how such policies

construct the context for patients’ decision-making. Specifically, it examines how the systems that

organizations create for new technologies shape the roles of women in motherhood and pregnancy.

Using qualitative methods, the dissertation examines how one private California healthcare

organization constructed policies regarding a new prenatal genetic test: non-invasive prenatal

screening (NIPT) using cell free DNA.1 The rapid uptake of NIPT since 2013 has led to

organizational upheaval as healthcare administrators struggle to categorize these new tests, which

blends the ease of basic blood screening most women have been offered for years (just a blood

draw) with claims of diagnostic-level accuracy (99% for the condition of Down Syndrome),

allowing women to forego an invasive procedure like amniocentesis. The study ethnographically

traces the process of policy creation and its impact on the ground by (1) observing how a policy

committee dedicated to moving NIPT from a Genetics department at a regional healthcare

organization to its Obstetrics department made new policies on NIPT use, and the (2) observing

the impact of these new NIPT policies on “the ground” at local Obstetrics clinics.

Little research has examined the process of policy-making for patient education. This study builds

on literature on the constitutive nature of law and policy (Sarat and Kearns 1993) to show how

organizational policies can constitute what technology means: the roles, responsibilities and

identities of organizational personnel and those who use their services (e.g. women who are

pregnant). More than simply processing patients who come through the door, organizational

policies, like law, redefine who patients are, and what they experience both empirically and

normatively. This dissertation studies how in this process institutional logics construct new risks

and responsibilities for women while pregnant.

1 NIPT claims to isolate a fetus’s DNA from its mother’s blood, allowing testing platforms to search for indications

the fetus has an abnormal chromosome.

iii

Tracing the policy formation-to-implementation process shows: 1) how actors in organizations

used various institutional logics to negotiate the meaning of new technologies in policies, practices,

and routines; and 2) how the logics that organizational actors use construct the social meanings of

patient education, patient autonomy, and the purpose of NIPT use. During the organizational

transition from the Genetics Department to Obstetrics Department, informed consent for NIPT was

decoupled from its intended aims as envisioned in bio- and medical-ethics, and as it had formerly

been implemented in the Genetics Department. This dissertation argues that decoupling happened

because of a change in institutional logics when NIPT use moved between departments. When the

logic changed, patient needs, interests, and identity were conceptualized around different frames

of motherhood. The encompassing changes in how the new NIPT system was constructed shed

light on why it matters which logic is used in organizational policy-making: the resources and

care available to women change as a result of how their needs and responsibilities are

conceptualized.

Main Content
For improved accessibility of PDF content, download the file to your device.
Current View