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

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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.
Funding Information
  • National Institute of Child Health and Human Development (K23HD103961, R01HD111426)

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