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.
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.
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