Abstract
Abstract Informed decisions concerning non-invasive prenatal testing (NIPT) seem contingent on health professionals and expectant parents (1) having access to multifaceted information about the procedure of NIPT and the subsequent choices; and (2) actively reflecting about what prenatal screening means beyond the medical level (including personal values and beliefs). International studies show that many pregnant women do not make informed decisions about prenatal testing (Beulen et al. 2016). Interviews we conducted with various stakeholders in Belgium show similar tendencies.Based on transdisciplinary research (Dehens et al. 2017)—which included stakeholder interviews, and a review of academic literature, current prenatal screening guidelines, and good practices—we propose three initiatives that can help stimulate informed choices. The initiatives are: (1) a decision aid that encourages expectant parents to think about NIPT, its possible outcomes, and the conditions NIPT screens for (see e.g. Smith et al. 2018; Carslon et al. 2019); (2) the creation of a nation-wide protocol (draaiboek) for prenatal screening outlining what information should be provided at what point during a pregnancy, in what way, and by whom (see for instance the Draaiboek Prenatale screening down-, edwards- en patausyndroom en structureel echoscopisch onderzoek versie 9.0 in the Netherlands); and (3) an online platform featuring a balanced representation of testimonials about various experiences with the main conditions NIPT screens for taking Braverman (2008) as a starting point. These initiatives were discussed (conceptually) at a round table discussion with a broad range of stakeholders (May 8, 2019). A concluding poll showed <target target-type="page-num" id="p-20"/>a strong consensus concerning the need to develop a prenatal screening protocol and a decision aid in order to help health professionals and expectant parents, navigate through prenatal screening programs in Belgium. Anticipating the widening scope of genetic tests, a general plan of action is necessary to ensure counseling possibilities and informed decisions.
Highlights
Two pre-conditions for informed decisions in prenatal screening are fulfilled when expectant parents have “adequate decision-relevant knowledge” and when their decisions for or against prenatal testing reflect their values about and attitudes toward prenatal testing (Beulen et al 2016: 1410) and, we would add, disability
We gathered a panel of 30 stakeholders for the round table among whom were gynecologists, midwives, bioethicists, parents, counselors, politicians, psychologists, parents of persons with Down syndrome, disability organizations and ((bio)medical) students
The decision to opt for prenatal screening, including non-invasive prenatal testing (NIPT), should be informed and well-considered
Summary
Two pre-conditions for informed decisions in prenatal screening are fulfilled when expectant parents have “adequate decision-relevant knowledge” and when their decisions for or against prenatal testing reflect their values about and attitudes toward prenatal testing (Beulen et al 2016: 1410) and, we would add, disability. The issue of genetic counseling in Belgium gained momentum when the federal government decided to reduce the cost of NIPT to €8.68 for all women who have public health insurance in Belgium, but additional resources for counseling did not follow (Costan et al 2018). This decision, and the speed with which the policy was implemented in July 2017, sparked societal discussion. No country had at that date made NIPT more accessible to pregnant women than Belgium. A large majority of pregnant women opt for NIPT. To our knowledge, no additional budget has been made available for genetic counseling
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