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A qualitative study of women and partners from Lebanon and Quebec regarding an expanded scope of noninvasive prenatal testing

BACKGROUND: In the near future, developments in non-invasive prenatal testing (NIPT) may offer couples the opportunity to expand the range of genetic conditions tested with this technology. This possibility raises a host of ethical and social concerns, such as the type of information (medical vs. no...

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Autores principales: Haidar, Hazar, Le Clerc-Blain, Jessica, Vanstone, Meredith, Laberge, Anne-Marie, Bibeau, Gilles, Ghulmiyyah, Labib, Ravitsky, Vardit
Formato: Online Artículo Texto
Lenguaje:English
Publicado: BioMed Central 2021
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7805222/
https://www.ncbi.nlm.nih.gov/pubmed/33441113
http://dx.doi.org/10.1186/s12884-020-03538-y
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author Haidar, Hazar
Le Clerc-Blain, Jessica
Vanstone, Meredith
Laberge, Anne-Marie
Bibeau, Gilles
Ghulmiyyah, Labib
Ravitsky, Vardit
author_facet Haidar, Hazar
Le Clerc-Blain, Jessica
Vanstone, Meredith
Laberge, Anne-Marie
Bibeau, Gilles
Ghulmiyyah, Labib
Ravitsky, Vardit
author_sort Haidar, Hazar
collection PubMed
description BACKGROUND: In the near future, developments in non-invasive prenatal testing (NIPT) may offer couples the opportunity to expand the range of genetic conditions tested with this technology. This possibility raises a host of ethical and social concerns, such as the type of information (medical vs. non-medical information) that couples might be exposed to and how this might complicate their informed decision-making. Currently, only limited research, mainly carried out in western countries, was conducted on women’s and partners’ views regarding the potential expansion of NIPT. METHODS: This study used semi-structured interviews with pregnant women and their partners to explore their views on future potential NIPT applications such as non-medical sex selection and non-medical traits, paternity testing, and NIPT use for fetal whole genome sequencing (FWGS). It was conducted in Lebanon and Quebec, as case studies to explore the impact of cultural differences on these views. RESULTS: We found no differences and many similarities when comparing the perceptions of participants in both contexts. While couples in both settings disapproved of the use of NIPT for non-medical sex selection and non-medical traits such as physical characteristics, they were near-unanimous about their support for its use for paternity testing in specific cases, such as legal doubts or conflicts related to the identity of the father. Participants were more ambivalent about NIPT for Fetal Whole Genome Sequencing. They supported this use to detect conditions that would express at birth or early childhood, while objecting to testing for adult-onset conditions. CONCLUSIONS: These results can further inform the debate on the future uses of NIPT and future policy related its implementation. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s12884-020-03538-y.
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spelling pubmed-78052222021-01-14 A qualitative study of women and partners from Lebanon and Quebec regarding an expanded scope of noninvasive prenatal testing Haidar, Hazar Le Clerc-Blain, Jessica Vanstone, Meredith Laberge, Anne-Marie Bibeau, Gilles Ghulmiyyah, Labib Ravitsky, Vardit BMC Pregnancy Childbirth Research Article BACKGROUND: In the near future, developments in non-invasive prenatal testing (NIPT) may offer couples the opportunity to expand the range of genetic conditions tested with this technology. This possibility raises a host of ethical and social concerns, such as the type of information (medical vs. non-medical information) that couples might be exposed to and how this might complicate their informed decision-making. Currently, only limited research, mainly carried out in western countries, was conducted on women’s and partners’ views regarding the potential expansion of NIPT. METHODS: This study used semi-structured interviews with pregnant women and their partners to explore their views on future potential NIPT applications such as non-medical sex selection and non-medical traits, paternity testing, and NIPT use for fetal whole genome sequencing (FWGS). It was conducted in Lebanon and Quebec, as case studies to explore the impact of cultural differences on these views. RESULTS: We found no differences and many similarities when comparing the perceptions of participants in both contexts. While couples in both settings disapproved of the use of NIPT for non-medical sex selection and non-medical traits such as physical characteristics, they were near-unanimous about their support for its use for paternity testing in specific cases, such as legal doubts or conflicts related to the identity of the father. Participants were more ambivalent about NIPT for Fetal Whole Genome Sequencing. They supported this use to detect conditions that would express at birth or early childhood, while objecting to testing for adult-onset conditions. CONCLUSIONS: These results can further inform the debate on the future uses of NIPT and future policy related its implementation. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s12884-020-03538-y. BioMed Central 2021-01-13 /pmc/articles/PMC7805222/ /pubmed/33441113 http://dx.doi.org/10.1186/s12884-020-03538-y Text en © The Author(s) 2021 Open AccessThis article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated in a credit line to the data.
spellingShingle Research Article
Haidar, Hazar
Le Clerc-Blain, Jessica
Vanstone, Meredith
Laberge, Anne-Marie
Bibeau, Gilles
Ghulmiyyah, Labib
Ravitsky, Vardit
A qualitative study of women and partners from Lebanon and Quebec regarding an expanded scope of noninvasive prenatal testing
title A qualitative study of women and partners from Lebanon and Quebec regarding an expanded scope of noninvasive prenatal testing
title_full A qualitative study of women and partners from Lebanon and Quebec regarding an expanded scope of noninvasive prenatal testing
title_fullStr A qualitative study of women and partners from Lebanon and Quebec regarding an expanded scope of noninvasive prenatal testing
title_full_unstemmed A qualitative study of women and partners from Lebanon and Quebec regarding an expanded scope of noninvasive prenatal testing
title_short A qualitative study of women and partners from Lebanon and Quebec regarding an expanded scope of noninvasive prenatal testing
title_sort qualitative study of women and partners from lebanon and quebec regarding an expanded scope of noninvasive prenatal testing
topic Research Article
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7805222/
https://www.ncbi.nlm.nih.gov/pubmed/33441113
http://dx.doi.org/10.1186/s12884-020-03538-y
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