Facilitating informed choice about non-invasive prenatal testing (NIPT): a systematic review and qualitative meta-synthesis of women’s experiences

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.Electronic supplementary materialThe online version of this article (10.1186/s12884-018-2168-4) contains supplementary material, which is available to authorized users.

Implementation challenges for an ethical introduction of noninvasive prenatal testing: a qualitative study of healthcare professionals’ views from Lebanon and Quebec

“…This is consistent with other studies, emphasizing a view of health care providers that the cost of NIPT creates disparities in access to the test [27]. A focus on cost is also congruent with the findings of other studies of women's views [10,28,29], including our own study of women and couples in Lebanon and Quebec [19].…”

What are women saying about noninvasive prenatal testing? An analysis of online pregnancy discussion forums

“…Our findings indicate a potential area of unmet need in the current support available for women who are considering NIPT screening, namely, experiential information and a prescribed forum to ask questions and get support, similar to that in Netherlands . Our findings also echo those published recently that some women were not satisfied about the quality and/or quantity of information about NIPT that was given to them by their providers—which could leave them to seek information from other sources, as we observed . Having access to experiential information, by adding narratives to factual information, is thought to offer a more complete understanding of participation in screening .…”

“…18 Our findings also echo those published recently that some women were not satisfied about the quality and/or quantity of information about NIPT that was given to them by their providers-which could leave them to seek information from other sources, as we observed. 19 Having access to experiential information, by adding narratives to factual information, is thought to offer a more complete understanding of participation in screening. 20 This type of information is already used in colorectal cancer screening 21 and has previously been suggested for prenatal screening.…”

The Influence of Experiential Knowledge and Societal Perceptions on Decision-Making Regarding Non-Invasive Prenatal Testing (NIPT)

“…Technological advancements have facilitated a safer, less invasive form of prenatal genetic testing. As a result, women may interpret NIPT usage as routine, expanding the threat of "routinization" [11,10]. Routinization changes how women imagine and weigh their options, such that some women may view NIPT as "just another blood test" and uptake NIPT "without fully understanding its importance or implications" [10].…”

“…As a result, women may interpret NIPT usage as routine, expanding the threat of "routinization" [11,10]. Routinization changes how women imagine and weigh their options, such that some women may view NIPT as "just another blood test" and uptake NIPT "without fully understanding its importance or implications" [10]. Thus, the technological ease of NIPT may obscure the significance of the decision to utilize it [13] and paradoxically undermine the ability for women to make autonomous, informed reproductive choices [10].…”