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Postpartum women's attitudes to disclosure of adult‐onset conditions in pregnancy

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...

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Autores principales: 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
Formato: Online Artículo Texto
Lenguaje:English
Publicado: John Wiley and Sons Inc. 2022
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9539988/
https://www.ncbi.nlm.nih.gov/pubmed/35484937
http://dx.doi.org/10.1002/pd.6162
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author 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
author_facet 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
author_sort Libman, Vitalia
collection PubMed
description 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.
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spelling pubmed-95399882022-10-14 Postpartum women's attitudes to disclosure of adult‐onset conditions in pregnancy 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 Prenat Diagn Original Articles 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. John Wiley and Sons Inc. 2022-05-04 2022-07 /pmc/articles/PMC9539988/ /pubmed/35484937 http://dx.doi.org/10.1002/pd.6162 Text en © 2022 The Authors. Prenatal Diagnosis published by John Wiley & Sons Ltd. https://creativecommons.org/licenses/by-nc-nd/4.0/This is an open access article under the terms of the http://creativecommons.org/licenses/by-nc-nd/4.0/ (https://creativecommons.org/licenses/by-nc-nd/4.0/) License, which permits use and distribution in any medium, provided the original work is properly cited, the use is non‐commercial and no modifications or adaptations are made.
spellingShingle Original Articles
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
Postpartum women's attitudes to disclosure of adult‐onset conditions in pregnancy
title Postpartum women's attitudes to disclosure of adult‐onset conditions in pregnancy
title_full Postpartum women's attitudes to disclosure of adult‐onset conditions in pregnancy
title_fullStr Postpartum women's attitudes to disclosure of adult‐onset conditions in pregnancy
title_full_unstemmed Postpartum women's attitudes to disclosure of adult‐onset conditions in pregnancy
title_short Postpartum women's attitudes to disclosure of adult‐onset conditions in pregnancy
title_sort postpartum women's attitudes to disclosure of adult‐onset conditions in pregnancy
topic Original Articles
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9539988/
https://www.ncbi.nlm.nih.gov/pubmed/35484937
http://dx.doi.org/10.1002/pd.6162
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