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‘Is it better not to know certain things?’: views of women who have undergone non-invasive prenatal testing on its possible future applications

Non-invasive prenatal testing (NIPT) is at the forefront of prenatal screening. Current uses for NIPT include fetal sex determination and screening for chromosomal disorders such as trisomy 21 (Down syndrome). However, NIPT may be expanded to many different future applications. There are a potential...

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Autores principales: Bowman-Smart, Hilary, Savulescu, Julian, Mand, Cara, Gyngell, Christopher, Pertile, Mark D, Lewis, Sharon, Delatycki, Martin B
Formato: Online Artículo Texto
Lenguaje:English
Publicado: BMJ Publishing Group 2019
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6582742/
https://www.ncbi.nlm.nih.gov/pubmed/30679192
http://dx.doi.org/10.1136/medethics-2018-105167
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author Bowman-Smart, Hilary
Savulescu, Julian
Mand, Cara
Gyngell, Christopher
Pertile, Mark D
Lewis, Sharon
Delatycki, Martin B
author_facet Bowman-Smart, Hilary
Savulescu, Julian
Mand, Cara
Gyngell, Christopher
Pertile, Mark D
Lewis, Sharon
Delatycki, Martin B
author_sort Bowman-Smart, Hilary
collection PubMed
description Non-invasive prenatal testing (NIPT) is at the forefront of prenatal screening. Current uses for NIPT include fetal sex determination and screening for chromosomal disorders such as trisomy 21 (Down syndrome). However, NIPT may be expanded to many different future applications. There are a potential host of ethical concerns around the expanding use of NIPT, as examined by the recent Nuffield Council report on the topic. It is important to examine what NIPT might be used for before these possibilities become consumer reality. There is limited research exploring views of women on possible future uses of NIPT, particularly those of women who have undergone NIPT. In this study, we examined the views of women who undertook NIPT previously on the acceptability of and interest levels in using NIPT for a number of current and possible future applications. These included several medical conditions encompassing psychiatric, neurodevelopmental and adult-onset conditions as well as non-medical traits such as intelligence. One thousand women were invited to participate and 235 eligible surveys were received. Women generally reported an interest in using NIPT for medical conditions that severely impacted quality of life and with an onset earlier in life and stressed the importance of the accuracy of the test. Concerns were raised about the use of NIPT for non-medical traits. Respondents indicated that termination of pregnancy was not their only reason for testing, particularly in the case of sex. These results can further inform the ethical debate around the increasing integration of NIPT into healthcare systems.
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spelling pubmed-65827422019-07-05 ‘Is it better not to know certain things?’: views of women who have undergone non-invasive prenatal testing on its possible future applications Bowman-Smart, Hilary Savulescu, Julian Mand, Cara Gyngell, Christopher Pertile, Mark D Lewis, Sharon Delatycki, Martin B J Med Ethics Original Research Non-invasive prenatal testing (NIPT) is at the forefront of prenatal screening. Current uses for NIPT include fetal sex determination and screening for chromosomal disorders such as trisomy 21 (Down syndrome). However, NIPT may be expanded to many different future applications. There are a potential host of ethical concerns around the expanding use of NIPT, as examined by the recent Nuffield Council report on the topic. It is important to examine what NIPT might be used for before these possibilities become consumer reality. There is limited research exploring views of women on possible future uses of NIPT, particularly those of women who have undergone NIPT. In this study, we examined the views of women who undertook NIPT previously on the acceptability of and interest levels in using NIPT for a number of current and possible future applications. These included several medical conditions encompassing psychiatric, neurodevelopmental and adult-onset conditions as well as non-medical traits such as intelligence. One thousand women were invited to participate and 235 eligible surveys were received. Women generally reported an interest in using NIPT for medical conditions that severely impacted quality of life and with an onset earlier in life and stressed the importance of the accuracy of the test. Concerns were raised about the use of NIPT for non-medical traits. Respondents indicated that termination of pregnancy was not their only reason for testing, particularly in the case of sex. These results can further inform the ethical debate around the increasing integration of NIPT into healthcare systems. BMJ Publishing Group 2019-04 2019-01-24 /pmc/articles/PMC6582742/ /pubmed/30679192 http://dx.doi.org/10.1136/medethics-2018-105167 Text en © Author(s) (or their employer(s)) 2019. Re-use permitted under CC BY. Published by BMJ. This is an open access article distributed in accordance with the Creative Commons Attribution 4.0 Unported (CC BY 4.0) license, which permits others to copy, redistribute, remix, transform and build upon this work for any purpose, provided the original work is properly cited, a link to the licence is given, and indication of whether changes were made. See: https://creativecommons.org/licenses/by/4.0/.
spellingShingle Original Research
Bowman-Smart, Hilary
Savulescu, Julian
Mand, Cara
Gyngell, Christopher
Pertile, Mark D
Lewis, Sharon
Delatycki, Martin B
‘Is it better not to know certain things?’: views of women who have undergone non-invasive prenatal testing on its possible future applications
title ‘Is it better not to know certain things?’: views of women who have undergone non-invasive prenatal testing on its possible future applications
title_full ‘Is it better not to know certain things?’: views of women who have undergone non-invasive prenatal testing on its possible future applications
title_fullStr ‘Is it better not to know certain things?’: views of women who have undergone non-invasive prenatal testing on its possible future applications
title_full_unstemmed ‘Is it better not to know certain things?’: views of women who have undergone non-invasive prenatal testing on its possible future applications
title_short ‘Is it better not to know certain things?’: views of women who have undergone non-invasive prenatal testing on its possible future applications
title_sort ‘is it better not to know certain things?’: views of women who have undergone non-invasive prenatal testing on its possible future applications
topic Original Research
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6582742/
https://www.ncbi.nlm.nih.gov/pubmed/30679192
http://dx.doi.org/10.1136/medethics-2018-105167
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