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 expe‐ riences of pregnant women, who were offered FTS, about these concerns, and the possibility of a broadened scope. Nineteen pregnant women representing a diver‐ sity 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. K E Y W O R D S Decision‐making, deliberation, expanding scope, genetic counseling, NIPT, psychosocial, reimbursement, societal pressure Robert‐Jan H. Galjaard and Sam R. Riedijk are considered as joint senior authors. This is an open access article under the terms of the Creative Commons Attribution‐NonCommercial‐NoDerivs License, which permits use and distribution in any medium, provided the original work is properly cited, the use is non‐commercial and no modifications or adaptations are made. © 2019 The Authors. Journal of Genetic Counseling on behalf of National Society of Genetic Counselors. 112 | wileyonlinelibrary.com/journal/jgc4 J Genet Couns. 2020;29:112–121. | 113 1 | I NTRO D U C TI O N forego screening (Lewis, Silcock, & Chitty, 2013), and (c) because NIPT can be conducted early in the pregnancy, it may result in the The noninvasive prenatal test (NIPT) provides an easy form of first trivialization of abortion (Farrell, Agatisa, & Nutter, 2014; Farrimond trimester prenatal screening (FTS). In the Netherlands, NIPT screens & Kelly, 2013). However, concerns about informed decision‐making, for trisomies 21, 18, and 13 and is offered to all pregnant women, pressure to test, and stigmatization lack empirical evidence, which costing them €175. When using genome sequencing, NIPT allows questions their validity (Kater‐Kuipers, Beauf