Postpartum women's attitudes to disclosure of adult‐onset conditions in pregnancy. (4th May 2022)

• Record Type: Journal Article
• Authors: Libman, Vitalia; Macarov, Michal; Friedlander, Yechiel; Goldman‐Mellor, Sidra; Israel, Salomon; Hochner‐Celnikier, Drorith; Sompolinsky, Yishai; Dior, Uri Pinchas; Osovsky, Michael; Basel‐Salmon, Lina; Wiznitzer, Arnon; Neumark, Yehuda; Meiner, Vardiella; Frumkin, Ayala; Shkedi‐Rafid, Shiri; Hochner, Hagit
• Is Part Of: Prenatal diagnosis. Volume 42:Number 8(2022)
• Page Start: 1038
• Page End: 1048
• Publication Date: 2022-05-04
• Subjects: Prenatal diagnosis -- Periodicals; Fetus -- Diseases -- Diagnosis -- Periodicals; Electronic journals; 618.32075
• DOI: 10.1002/pd.6162
• Languages: English
• ISSNs: 0197-3851

Abstract

Abstract: Background: Advanced prenatal genomic technologies can identify risks for adult‐onset (AO) conditions in the fetus, challenging the traditional purpose of prenatal testing. Professional guidelines commonly support disclosure of high‐penetrance AO actionable conditions, yet attitudes of women/parents to these findings and factors affecting their attitudes are understudied. Methods: We explored 941 (77% response rate) postpartum women's attitudes towards receiving prenatal genetic information, and associations of sociodemographic, medical and psychological characteristics with their choices, focusing on AO conditions. Results: Women largely support the disclosure of actionable AO findings (58.4%), in line with professional guidelines. A third of the women also supported the disclosure of non‐actionable AO conditions. Stronger religious observance ( p < 0.001) and higher psychological distress ( p = 0.024) were associated with decreased interest in receiving actionable AO conditions, whereas higher concern for fetal health yielded increased interest ( p = 0.032). Attitudes towards disclosure were strongly associated with women's perceived benefit of such information for their own, partner's, and future child's health. Termination of pregnancy based on such information received very little support. Conclusion: In‐light of the demonstrated understanding of nuanced genetic information and the observed diversity in attitudes, a culturally competent opt‐in/out policy could be considered. If full‐disclosure is practiced, support should be provided to those expressing higher levels of distress. Key points: What is known Advanced prenatal genomic technologies can identify risks for adult‐onset (AO) conditions. Professional guidelines support disclosure of high‐penetrance AO actionable conditions in pregnancy, yet attitudes of women/parents towards receiving this information are understudied. What this study adds Investigating the attitudes of nearly 1000 postpartum women demonstrates that women largely support the disclosure of actionable AO findings in pregnancy. Stronger religious observance and higher psychological distress predict decreased interest in receiving this information.