A Qualitative Study of Pregnant Patient Perspectives on Genetic Privacy of Cell-Free DNA and Optimal Design of a Prenatal Genetics Video-Based Educational Intervention.

Abstract

Objective: To receive feedback on the design and content of a prenatal genetics video tool and explore pregnant patients' views on genetic information privacy.

Methods: Video education covered prenatal aneuploidy screening and diagnosis and genetic privacy of cell-free DNA (cfDNA). English or Spanish-speaking adult patients, presenting for pregnancy dating ultrasound at a health center or clinic were eligible to answer a demographic questionnaire and view video education. Virtual, in-depth semi-structured interviews were then performed. Thematic analysis of transcripts was performed; all were double coded.

Results: Twenty participants completed interviews, achieving data saturation.

Demographics: median age 30.5 years, 50% Spanish-speaking, 55% White, 60% Hispanic, 65% had a high-school degree or less, 60% parous. Themes: The intervention was acceptable, accessible, and aided in decision-making. Tangible adjunctive resources were desired. Content misunderstandings included absolute risk of diagnostic testing and perception of aneuploidy as hereditary. Genetic privacy played a minor role in decision-making. Participants were amenable to data-sharing with third parties, but wanted to be informed. They misunderstood that genetic data could never truly be de-identified. No differences were found in opinions on sharing fetal versus maternal data or with academic versus private institutions.

Conclusion: Video education was acceptable and comprehensible, yet participants showed limited awareness of cfDNA privacy implications.