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.

 0 Người đánh giá. Xếp hạng trung bình 0

Tác giả: Paola C Jiménez Muñoz, Adam K Lewkowitz, Rose C Mahoney, Stephanie Nunez, Christian Parobek, Melissa L Russo, Carolyn Slack, Margaret M Thorsen

Ngôn ngữ: eng

Ký hiệu phân loại:

Thông tin xuất bản: England : Prenatal diagnosis , 2025

Mô tả vật lý:

Bộ sưu tập: NCBI

ID: 710274

 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.
Tạo bộ sưu tập với mã QR

THƯ VIỆN - TRƯỜNG ĐẠI HỌC CÔNG NGHỆ TP.HCM

ĐT: (028) 36225755 | Email: tt.thuvien@hutech.edu.vn

Copyright @2024 THƯ VIỆN HUTECH