Trust As the Foundation for Informed Decision-Making in Prenatal Genetic Screening and Diagnostic Testing: A...

Prenatal genetic screening and diagnostic testing (PS&D) requires pregnant patients to make time-sensitive, high-stakes decisions that often involve multifaceted risk assessments and deeply personal values. These decisions are becoming increasingly complex as the clinical integration of new genomic science and technologies advances alongside parallel changes in maternal-foetal medicine, neonatology, and reproductive health services. Despite these changes, there is limited guidance on how best to prepare patients to formulate PS&D decisions with significant implications for obstetric outcomes. The goal of this study was to characterise pregnant patients' perceptions of the decision-making process and identify facilitators and barriers for them to make informed decisions about their PS&D options.

We conducted a qualitative study of pregnant and postpartum individuals receiving obstetric care within a large healthcare system. Participants, enroled across early pregnancy, late pregnancy, and postpartum periods, completed in-depth semi-structured interviews exploring their experiences, preferences, and needs related to PS&D decision-making. Interviews were recorded, transcribed verbatim, and analysed by a multidisciplinary team using inductive thematic analysis, supported by iterative coding, memoing, and theme identification.

Most participants were < 35 years of age (48 of 61) and had a prior pregnancy (42 of 61). Four major subthemes emerged around a central concept of trust affecting medical decision-making: (1) Trust as a means of navigating the complexity of PS&D: Patients relied heavily on their obstetric (OB) providers to interpret complex information and guide decisions, particularly as testing decisions became more consequential and time sensitive. (2) Trust as a prerequisite for informed decision-making: Patients emphasised that psychological safety and relational continuity were necessary before they could ask questions, disclose concerns, or integrate medical information with personal values. (3) Erosion of trust due to perceived bias, judgement, or assumptions: Provider bias, whether expressed through communication style, assumptions about patient preferences, or perceived judgement, undermined trust and impeded informed, values-aligned decisions. (4) Structural barriers in prenatal care models: Limited continuity, time constraints, and triaged group-based care created obstacles to building trust and compounded difficulties in discussing sensitive topics across multiple providers.

Our findings suggest that trust is a core component of informed PGT decision-making and central to supporting patient-centred communication amid uncertainty, cascading decisions, and evolving genomic technologies. Strategies to build and maintain trust, particularly within multi-provider prenatal care models, are essential to enabling informed, values-concordant prenatal decision-making. System-level interventions that promote continuity, unbiased communication, and structured agenda-setting help strengthen prenatal care delivery and improve patient experience and outcomes.

Patients were involved in three main aspects of the study: (1) identifying the need for research that supports PS&D decision-making through our prior work with patients as part study participation in focus groups, interviews, and survey studies, (2) contributing to the development of the interview guide through direct feedback to the instrument's questions and methods of data collection, and (3) participating in the study interview and providing their perspectives on how to support them and other pregnant patients as they face a myriad of pre and posttest decisions.