Cargando…
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...
Autores principales: | , , , , , , , , , , , , , , , |
---|---|
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 |
_version_ | 1784803612239593472 |
---|---|
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. |
format | Online Article Text |
id | pubmed-9539988 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2022 |
publisher | John Wiley and Sons Inc. |
record_format | MEDLINE/PubMed |
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 |
work_keys_str_mv | AT libmanvitalia postpartumwomensattitudestodisclosureofadultonsetconditionsinpregnancy AT macarovmichal postpartumwomensattitudestodisclosureofadultonsetconditionsinpregnancy AT friedlanderyechiel postpartumwomensattitudestodisclosureofadultonsetconditionsinpregnancy AT goldmanmellorsidra postpartumwomensattitudestodisclosureofadultonsetconditionsinpregnancy AT israelsalomon postpartumwomensattitudestodisclosureofadultonsetconditionsinpregnancy AT hochnercelnikierdrorith postpartumwomensattitudestodisclosureofadultonsetconditionsinpregnancy AT sompolinskyyishai postpartumwomensattitudestodisclosureofadultonsetconditionsinpregnancy AT dioruripinchas postpartumwomensattitudestodisclosureofadultonsetconditionsinpregnancy AT osovskymichael postpartumwomensattitudestodisclosureofadultonsetconditionsinpregnancy AT baselsalmonlina postpartumwomensattitudestodisclosureofadultonsetconditionsinpregnancy AT wiznitzerarnon postpartumwomensattitudestodisclosureofadultonsetconditionsinpregnancy AT neumarkyehuda postpartumwomensattitudestodisclosureofadultonsetconditionsinpregnancy AT meinervardiella postpartumwomensattitudestodisclosureofadultonsetconditionsinpregnancy AT frumkinayala postpartumwomensattitudestodisclosureofadultonsetconditionsinpregnancy AT shkedirafidshiri postpartumwomensattitudestodisclosureofadultonsetconditionsinpregnancy AT hochnerhagit postpartumwomensattitudestodisclosureofadultonsetconditionsinpregnancy |