ArticleEuropean journal of human genetics : EJHG2016
Development and validation of a measure of informed choice for women undergoing non-invasive prenatal testing for aneuploidy.
Article in European journal of human genetics : EJHG, 2016. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 42 papers, 2 of them syntheses that pooled it.
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The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
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Who cites it
42 citing papers in PubMed, 2 syntheses or guidelines pooled it, 78 citations in OpenAlex.
- Couples experiences of receiving uncertain results following prenatal microarray or exome sequencing: A mixed-methods systematic review.Prenatal diagnosis · 2020Pooled it
- Facilitating informed choice about non-invasive prenatal testing (NIPT): a systematic review and qualitative meta-synthesis of women's experiences.BMC pregnancy and childbirth · 2019Pooled it
- Reducing decisional conflict in decisions about prenatal genetic testing: the impact of a dyadic intervention at the start of prenatal care.Journal of perinatal medicine · 2024Trial
- Does an educational video for aneuploidy screening improve informed choice among pregnant women? A randomised controlled trial.Prenatal diagnosis · 2023Trial
- The effect of a decision aid on informed decision-making in the era of non-invasive prenatal testing: a randomised controlled trial.European journal of human genetics : EJHG · 2016Trial
- Article
- Are People From Black Communities Proportionately Represented in UK and US Studies Examining Views on Screening and Diagnostic Genetic Testing in Pregnancy? A Scoping Review.BJOG : an international journal of obstetrics and gynaecology · 2025Article
- Decision-making for termination of pregnancy following non-invasive prenatal testing: a qualitative exploration of french, english and German healthcare professionals' perceptions and concerns.Reproductive health · 2025Article
- Patient Preferences and Understanding of Genome-Wide Cell-Free DNA Screening for Foetal Chromosomal Imbalances: A Survey Study.Prenatal diagnosis · 2025Article
- Evaluation of face validity and core concepts of a novel knowledge scale for inherited heart disease: A pilot study.Journal of genetic counseling · 2025Article
- "Knowledge was clearly associated with education." epistemic positioning in the context of informed choice: a scoping review and secondary qualitative analysis.BMC medical ethics · 2025Article
- Perspectives of parents receiving normal results from genomic newborn screening: a mixed-methods evaluation from the early check program.Frontiers in genetics · 2025Article
- Pilot study of lung cancer screening for survivors of Hodgkin lymphoma.Haematologica · 2024Article
- Disparities in integrating non-invasive prenatal testing into antenatal healthcare in Australia: a survey of healthcare professionals.BMC pregnancy and childbirth · 2024Article
- Exploring attitudes and experiences with reproductive genetic carrier screening among couples seeking medically assisted reproduction: a longitudinal survey study.Journal of assisted reproduction and genetics · 2024Article
- Informed choice and routinization of the second-trimester anomaly scan: a national cohort study in the Netherlands.BMC pregnancy and childbirth · 2023Article
- Measuring quality and value in genetic counseling: The current landscape and future directions.Journal of genetic counseling · 2023Article
- Informed choice of pregnant women regarding noninvasive prenatal testing in Korea: a cross-sectional study.Korean journal of women health nursing · 2022Article
- Routinization of prenatal screening with the non-invasive prenatal test: pregnant women's perspectives.European journal of human genetics : EJHG · 2022Article
- Education and Consent for Population-Based DNA Screening: A Mixed-Methods Evaluation of the Early Check Newborn Screening Pilot Study.Frontiers in genetics · 2022Article
Corrections and comments
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Authors and funding
4 authors at 3 institutions in 1 country.
Funding
Abstract
Non-invasive prenatal testing (NIPT) using cell-free DNA for aneuploidy is a highly accurate screening test; however, concerns exist around the potential for routinisation of testing. The multidimensional measure of informed choice (MMIC) is a quantitative instrument developed to assess informed choice for Down syndrome screening (DSS). We have validated a modified MMIC for NIPT and measured informed choice among women offered NIPT in a public health service. The measure was distributed to women recruited across eight maternity units in the United Kingdom who had accepted DSS. Construct validity was assessed by simultaneously conducting qualitative interviews. Five hundred and eighty-five questionnaires were completed and 45 interviews conducted after blood-draw (or equivalent for those that declined NIPT). The measure demonstrated good internal consistency and internal validity. Results indicate the vast majority of women (89%) made an informed choice; 95% were judged to have good knowledge, 88% had a positive attitude and 92% had deliberated. Of the 11% judged to have made an uninformed choice, 55% had not deliberated, 41% had insufficient knowledge, and 19% had a negative attitude. Ethnicity (OR=2.78, P=0.003) and accepting NIPT (OR=16.05, P=0.021) were found to be significant predictors of informed choice. The high rate of informed choice is likely to reflect the importance placed on the provision of pre-test counselling in this study. It will be vital to ensure that this is maintained once NIPT is offered in routine clinical practice.
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.