TY - JOUR
T1 - Routinization of prenatal screening with the non-invasive prenatal test
T2 - pregnant women’s perspectives
AU - van der Meij, Karuna R.M.
AU - Njio, Annabel
AU - Martin, Linda
AU - Gitsels-van der Wal, Janneke T.
AU - Bekker, Mireille N.
AU - van Vliet-Lachotzki, Elsbeth H.
AU - van der Ven, A. Jeanine E.M.
AU - Kater-Kuipers, Adriana
AU - Timmermans, Danielle R.M.
AU - Sistermans, Erik A.
AU - Galjaard, Robert Jan H.
AU - Henneman, Lidewij
N1 - Funding Information:
Funding for this study was provided by the Netherlands Organization for Health Research and Development (ZonMw, grant no. 543002001).
Publisher Copyright:
© 2021, The Author(s).
PY - 2022/6
Y1 - 2022/6
N2 - Due to the favorable test characteristics of the non-invasive prenatal test (NIPT) in the screening of fetal aneuploidy, there has been a strong and growing demand for implementation. In the Netherlands, NIPT is offered within a governmentally supported screening program as a first-tier screening test for all pregnant women (TRIDENT-2 study). However, concerns have been raised that the test’s favorable characteristics might lead to uncritical use, also referred to as routinization. This study addresses women’s perspectives on prenatal screening with NIPT by evaluating three aspects related to routinization: informed choice, freedom to choose and (personal and societal) perspectives on Down syndrome. Nationwide, a questionnaire was completed by 751 pregnant women after receiving counseling for prenatal screening. Of the respondents, the majority (75.5%) made an informed choice for prenatal screening as measured by the multidimensional measure of informed choice (MMIC). Education level and religious affiliation were significant predictors of informed choice. The main reason to accept screening was “seeking reassurance” (25.5%), and the main reason to decline was “every child is welcome” (30.6%). The majority of respondents (87.7%) did not perceive societal pressure to test. Differences between test-acceptors and test-decliners in personal and societal perspectives on Down syndrome were found. Our study revealed high rates of informed decision-making and perceived freedom to choose regarding fetal aneuploidy screening, suggesting that there is little reason for concern about routinization of NIPT based on the perspectives of Dutch pregnant women. Our findings highlight the importance of responsible implementation of NIPT within a national screening program.
AB - Due to the favorable test characteristics of the non-invasive prenatal test (NIPT) in the screening of fetal aneuploidy, there has been a strong and growing demand for implementation. In the Netherlands, NIPT is offered within a governmentally supported screening program as a first-tier screening test for all pregnant women (TRIDENT-2 study). However, concerns have been raised that the test’s favorable characteristics might lead to uncritical use, also referred to as routinization. This study addresses women’s perspectives on prenatal screening with NIPT by evaluating three aspects related to routinization: informed choice, freedom to choose and (personal and societal) perspectives on Down syndrome. Nationwide, a questionnaire was completed by 751 pregnant women after receiving counseling for prenatal screening. Of the respondents, the majority (75.5%) made an informed choice for prenatal screening as measured by the multidimensional measure of informed choice (MMIC). Education level and religious affiliation were significant predictors of informed choice. The main reason to accept screening was “seeking reassurance” (25.5%), and the main reason to decline was “every child is welcome” (30.6%). The majority of respondents (87.7%) did not perceive societal pressure to test. Differences between test-acceptors and test-decliners in personal and societal perspectives on Down syndrome were found. Our study revealed high rates of informed decision-making and perceived freedom to choose regarding fetal aneuploidy screening, suggesting that there is little reason for concern about routinization of NIPT based on the perspectives of Dutch pregnant women. Our findings highlight the importance of responsible implementation of NIPT within a national screening program.
KW - Aneuploidy
KW - Down Syndrome/diagnosis
KW - Female
KW - Humans
KW - Infant, Newborn
KW - Pregnancy
KW - Pregnant Women
KW - Prenatal Diagnosis/methods
KW - Surveys and Questionnaires
UR - http://www.scopus.com/inward/record.url?scp=85113786408&partnerID=8YFLogxK
U2 - 10.1038/s41431-021-00940-8
DO - 10.1038/s41431-021-00940-8
M3 - Article
C2 - 34385671
AN - SCOPUS:85113786408
SN - 1018-4813
VL - 30
SP - 661
EP - 668
JO - European Journal of Human Genetics
JF - European Journal of Human Genetics
IS - 6
ER -