Date of Award

January 2021

Document Type

Open Access Thesis

Degree Name

Medical Doctor (MD)



First Advisor

Matthew Drago


Background: Prenatal detection of congenital anomalies has forced Maternal Fetal Medicine specialists (MFMs) to navigate many new ethical and legal issues when counseling expecting parents. And yet, little is known about the attitudes, beliefs and perceptions of MFMs regarding the intersection of prenatal diagnosis, disability and termination. Thus, we aimed to identify the key attitudes and opinions surrounding prenatal genetic testing, disability and termination of MFM specialists who counsel expectant mothers with a prenatal diagnosis of fetal anomaly.

Methods: This was a prospective, qualitative study using semi-structured interviews with MFMs across the nation, recruited through the snow-ball method. Interviews were audio- recorded, transcribed, and qualitatively analyzed using modified grounded theory by three reviewers.

Results: 2,227 codes from 17 interviews were grouped into six clusters. Codes were then characterized to triangulate MFM perspectives into 18 themes and 39 sub-themes. Difficulties with patient misunderstanding of prenatal genetic screening, diagnostic technology, the implications of certain genetic anomalies, and limited time to explain thesefactors were identified as major barriers to effective counseling. All physicians reported viewing themselves primarily as informants in the prenatal diagnostic process, and all offered their patients the option of termination in the case of the diagnosis of a severe or lethal congenital anomaly; however, physician definitions of severe or lethal congenital anomaly differed. Moreover, physicians reported fears of being perceived as coercive by patients, and a high degree of moral and emotional distress during these consultations. Finally, physicians identified legal, financial and structural barriers that prevented patients from accessing prenatal genetic diagnostic services and termination services. It was felt that these limitations ultimately inhibited autonomous decision making by patients.

Conclusions: These findings highlight important barriers, perspectives, and conflicts that occur for MFM providers during prenatal consults with pregnant women following prenatal discovery of congenital anomalies. Further exploration of the identified themes in this study would benefit MFM providers in identifying strategies to improve prenatal counseling.


This is an Open Access Thesis.

Open Access

This Article is Open Access