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

Abstract

The noninvasive prenatal test (NIPT) as the first trimester prenatal screening (FTS) for trisomies 21, 18, and 13 is offered to all pregnant women in the Netherlands. NIPT using genome sequencing allows for an expansion of the scope of FTS and the introduction of NIPT gives rise to ethical and societal concerns about deliberated decision‐making, pressure to engage in screening, and possible lack of equal access due to the financial contribution (€175) to NIPT. We explored the opinions and experiences of pregnant women, who were offered FTS, about these concerns, and the possibility of a broadened scope. Nineteen pregnant women representing a diversity of backgrounds were interviewed using a semi‐structured interview guide. Eight women did not opt for prenatal screening while 11 did (NIPT = 4, combined test = 7). Women experienced a free choice to accept or decline prenatal screening, despite sometimes receiving advice from others. Prior to pretest counseling, some women had already deliberated about what an abnormal test result would mean to them. Others accepted or declined FTS without deliberation. The current Dutch policy of requiring a co‐payment was acceptable to some, who believed that it functioned as a threshold to think carefully about FTS. Others were concerned that a financial threshold would lead to unequal access to screening. Finally, pregnant women found it difficult to formulate opinions on the scope of FTS, because of lack of knowledge. Life expectancy, severity, and treatability were considered important criteria for the inclusion of a condition in NIPT.

Non‐invasive prenatal test uptake in socioeconomically disadvantaged neighborhoods

“…A survey study among European healthcare providers indicated that the costs and a lack of reimbursement policy were considered to be the primary barrier to broader NIPT uptake 21 . Reimbursement of fetal aneuploidy screening might promote equitable access and informed decision‐making 5,22,23 …”

Discussing non‐invasive prenatal testing on Reddit: The benefits, the concerns, and the comradery

“…Redditors, however, also raise some concerns. These include anxieties that result from testing, difficulties accessing NIPT (ie, not having costs covered by insurance plans), the accuracy of NIPT results, confusion surrounding the interpretation of NIPT results, and the assistance provided by health entities regarding accessing the test and assisting with the interpretation of findings 1,7,9,46‐52 . Overall, Redditors in the discussions analyzed, expressed a strong enthusiasm about using NIPT.…”

“…It is also of interest that many Redditors had concerns about the accuracy of the test, which also included the topic of false positives. Further, many discussions detailed individuals dealing with positive results and sharing reservations around understanding risk, a highly subjective undertaking 47 . It is likely the case, therefore, that many individuals have not felt sufficiently supported by established health care systems and have turned to Reddit for answers and support.…”

Knowledge and attitudes regarding non‐invasive prenatal testing among women in Saudi Arabia

“…This, together with the general lack of knowledge observed, could partially be due to the time constraint that the obstetrician has when seeing a patient, or due to the belief that some information is not necessary before the test and can be discussed during result disclosure. Previous studies 26,27 have demonstrated that women are interested in receiving information about NIPT, its limitations and reliability, the possible results, their available options following a positive result and the three trisomies before undergoing the test. This aligns with the recommendations of the ISPD and NSGC that emphasise the importance of pre‐test and post‐test counselling 6–8 .…”