Women’s perspectives on the ethical implications of non-invasive prenatal testing: a qualitative analysis to inform health policy decisions

Abstract

BackgroundNon-Invasive Prenatal Testing (NIPT) is a technology which provides information about fetal genetic characteristics (including sex) very early in pregnancy by examining fetal DNA obtained from a sample of maternal blood. NIPT is a morally complex technology that has advanced quickly to market with a strong push from industry developers, leaving many areas of uncertainty still to be resolved, and creating a strong need for health policy that reflects women’s social and ethical values. We approach the need for ethical policy-making by studying the use of NIPT and emerging policy in the province of Ontario, Canada.MethodsUsing an adapted version of constructivist grounded theory, we conducted interviews with 38 women who have had personal experiences with NIPT. We used an iterative process of data collection and analysis and a staged coding strategy to conduct a descriptive analysis of ethics issues identified implicitly and explicitly by women who have been affected by this technology.ResultsThe findings of this paper focus on current ethical issues for women seeking NIPT, including place in the prenatal pathway, health care provider counselling about the test, industry influence on the diffusion of NIPT, consequences of availability of test results. Other issues gain relevance in the context of future policy decisions regarding NIPT, including funding of NIPT and principles that may govern the expansion of the scope of NIPT. These findings are not an exhaustive list of all the potential ethical issues related to NIPT, but rather a representation of the issues which concern women who have personal experience with this test.ConclusionsWomen who have had personal experience with NIPT have concerns and priorities which sometimes contrast dramatically with the theoretical ethics literature. These findings suggest the importance of engaging patients in ethical deliberation about morally complex technologies, and point to the need for more deliberative patient engagement work in this area.Electronic supplementary materialThe online version of this article (10.1186/s12910-018-0267-4) 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].…”

“…They proposed that for the moment, NIPT should be offered and covered for those women with high-risk pregnancies. This finding resonates with those in other studies where HCPs, as well as pregnant women [10], argued that NIPT offer and coverage should be provided for women with high-risk pregnancies.…”

“…The rapid pace, as well as the context in which NIPT is emerging, raise important ethical, legal and policy issues. For instance, the high cost of NIPT limits access for those without financial resources, creating inequity [10,11]. Since it became commercially available in 2011, the price of NIPT has quickly declined [12], but NIPT cost is a key challenge, amongst others, to an ethical implementation of NIPT in different countries.…”

Implementing non‐invasive prenatal testing (NIPT) in the Netherlands: An interview study exploring opinions about and experiences with societal pressure, reimbursement, and an expanding scope

“…In the literature, to help women make individualized decisions about the scope of prenatal screening, it has been suggested that women should choose from a menu of options (Bunnik, de Jong, Nijsingh, & de Wert, ), with different categories of conditions included in the screening offer. Also, in another interview study pregnant women favored ‘pure choice’ model for expanded NIPT, wherein reproductive autonomy and informed choice are used to justify any prenatal screening decision a women wants to make (Vanstone, Cernat, Nisker, & Schwartz, ). According to the findings of this study, such models would lead to practical problems: women had different interpretations of categories and found it hard to imagine what learning particular test results might mean to them and their child.…”

“…Analysis of the responses given by the pregnant women on the questions regarding the scope of NIPT showed that they consider three things to be important in deciding whether or not to screen for In the literature, to help women make individualized decisions about the scope of prenatal screening, it has been suggested that women should choose from a menu of options (Bunnik, de Jong, Nijsingh, & de Wert, 2013), with different categories of conditions included in the screening offer. Also, in another interview study pregnant women favored 'pure choice' model for expanded NIPT, wherein reproductive autonomy and informed choice are used to justify any prenatal screening decision a women wants to make (Vanstone, Cernat, Nisker, & Schwartz, 2018 A second issue raised by the expanded scope and its related informed choice is that some interviewed women wanted to receive the test results first, and only after something of relevance has been found, they would wish to learn more detailed information on the condition detected. These findings suggest that in case of an expanded NIPT women might prefer a layered counseling wherein information in several stages can be provided to women in order to prevent information overload, as is proposed in a layered consent model for personal genetic tests (Bunnik, Janssens, & Schermer, 2013).…”