Abstract
BackgroundNon-invasive prenatal testing (NIPT) can be used to accurately detect fetal chromosomal anomalies early in pregnancy by assessing cell-free fetal DNA present in maternal blood. The rapid diffusion of NIPT, as well as the ease and simplicity of the test raises concerns around informed decision-making and the potential for routinization. Introducing NIPT in a way that facilitates informed and autonomous decisions is imperative to the ethical application of this technology. We approach this imperative by systematically reviewing and synthesizing primary qualitative research on women’s experiences with and preferences for informed decision-making around NIPT.MethodsWe searched multiple bibliographic databases including Ovid MEDLINE, EBSCO Cumulative Index to Nursing & Allied Health Literature (CINAHL), and ISI Web of Science Social Sciences Citation Index (SSCI). Our review was guided by integrative qualitative meta-synthesis, and we used a staged coding process similar to that of grounded theory to conduct our analysis.ResultsThirty empirical primary qualitative research studies were eligible for inclusion. Women preferred to learn about NIPT from their clinicians, but they expressed dissatisfaction with the quality and quantity of information provided during counselling and often sought information from a variety of other sources. Women generally had a good understanding of test characteristics, and the factors of accuracy, physical risk, and test timing were the critical information elements that they used to make informed decisions around NIPT. Women often described NIPT as easy or just another blood test, highlighting threats to informed decision-making such as routinization or a pressure to test.ConclusionsWomen’s unique circumstances modulate the information that they value and require most in the context of making an informed decision. Widened availability of trustworthy information about NIPT as well as careful attention to the facilitation of counselling may help facilitate informed decision-making.Trial registrationPROSPERO 2018 CRD42018086261.
Highlights
Non-invasive prenatal testing (NIPT) can be used to accurately detect fetal chromosomal anomalies early in pregnancy by assessing cell-free fetal DNA present in maternal blood
We performed a systematic review of primary qualitative research about NIPT as part of a Health Quality Ontario (HQO) health technology assessment (HTA) on NIPT
The systematic review and meta-synthesis conducted for HQO described the experiences of women, clinicians, and others with rich lived experience of the test
Summary
Non-invasive prenatal testing (NIPT) can be used to accurately detect fetal chromosomal anomalies early in pregnancy by assessing cell-free fetal DNA present in maternal blood. Introducing NIPT in a way that facilitates informed and autonomous decisions is imperative to the ethical application of this technology. Non-invasive prenatal testing (NIPT) for chromosomal anomaly represents a significant evolution of prenatal screening technology. Testing with NIPT can be done as early as 9 to 10 weeks of pregnancy, up until the time of birth It is more accurate than other forms of prenatal screening, with a sensitivity ranging from 90 to 99% and specificity ranging from 99 to 100% depending on the condition [4]. Since it is non-invasive, it is not associated with iatrogenic pregnancy loss [7]
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