Down to Counsel: Towards A Transdisciplinary Toolbox for Non-directive Counseling in Prenatal Screening for Down Syndrome

Abstract

Since the introduction of non-invasive prenatal testing (NIPT) in Belgium in 2013, expectant parents have had access to a new efficient and reliable test for genetic abnormalities, including trisomy 13, 18 and 21. In 2017, the Belgian government decided to cover over 95% of the cost for all women who choose to take this test. In this context, a diagnosis of trisomy 21 (Down syndrome) presents an especially challenging decision for parents: it is impossible to tell the severity of impairment prenatally, and although several medical risks are involved in the condition, many individuals with Down syndrome live a long, happy, and relatively independent life (Shakespeare, 1998; Scott et. al., 2014). Expectant parents face a very difficult situation: how to decide whether or not to terminate a pregnancy? It appears that termination is becoming the routinized outcome of the clinical encounter during which a diagnosis is delivered.The intricacy of the matter, and the fact that many actors are involved, lead to the necessity of a transdisciplinary methodology when scrutinizing the future of prenatal counseling. However, medical professionals tend to approach Down syndrome from an exclusively medical perspective (Skirton and Barr, 2010), leaving aside the economic, social and psychological dimensions of living with Down syndrome. This may result in unbalanced information; some (perhaps precipitously) refer to this phenomenon as ‘nudging practices’ (Hippman et. al., 2012; Reid et. al., 2009). In order to address this imbalance, we adopt a stakeholder approach in this project: we consulted <target target-type="page-num" id="p-39"/>experts with diverse backgrounds and fields of expertise. Through this transdisciplinary approach, we hope to bring about a more transdisciplinary perspective directly within the offices of gynecologists and GPs. More specifically, we aim to find ways to provide GPs and gynecologists with direct access to information about the aforementioned dimensions of Down syndrome.The next step is to define a strategy to achieve this goal. Given the fact that medical professionals often lack both time and easy access to concise information about Down syndrome to present a nuanced perspective (Ahmed et. al., 2007), but are still the first in the prenatal screening process, the output of this project is the idea of an online tool in a succinct Q&A format. The goal of such a website would be to provide up-to-date, easily accessible and balanced information for general practitioners and gynecologists on multiple aspects of Down syndrome. This way, in anticipation of and directing explicitly towards further counseling by a multidisciplinary team, physicians can provide expectant parents with a more balanced, transdisciplinary view of Down syndrome, thereby enhancing their capability to make informed, autonomous and hence sustainable decisions about their pregnancies.

Stimulating Informed Decisions in Prenatal Screening: Exploring Initiatives to Aid Parental Decision-Making

“…For the identification of stakeholders this paper builds on the publication "Down to Counsel: Towards a Transdisciplinary Toolbox for Non-directive Counseling in Prenatal Screening for Down Syndrome" (Costan et al 2018). This publication was the result of a project by a team of students from various academic disciplines in 2017-2018 within the framework of the KU Leuven Transdisciplinary Insights Honours Programme.…”

“…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.…”

“…In Belgium, NIPT is routinely used but expectant parents are not always prepared for the difficult choices that the test potentially confronts them with (Costan et al 2018). Studies from other countries confirm that many pregnant women do not make informed decisions about prenatal testing (see for instance Beulen et al 2016).…”

“…provided (Kupperman et al 2009, Björklund et al 2012; and the way women bring together personal values and scientific knowledge (Potter et al 2008). Moreover, based on stakeholder interviews with representatives of Downsyndroom Vlaanderen (a contact group for parents with a child with Down syndrome) and Cozapo (a contact group for parents who decide to terminate a pregnancy following prenatal screening), Costan et al (2018) note that in Belgium, in the event of a positive NIPT result, expectant parents feel ill-prepared for the decision they are confronted with (2018: 41). Additionally, health professionals are reported by both contact groups to tend to steer expectant parents toward termination (Ibid: 41-42).…”

“…Additionally, health professionals are reported by both contact groups to tend to steer expectant parents toward termination (Ibid: 41-42). Costan et al (2018) traced this to the often purely medical perspective health professionals have of Down syndrome (Ibid: 42). Similar trends were communicated to us during our interactions with various stakeholders in Belgium, who further point to a lack of unified strategies for providing information and stimulating reflection in both expectant parents and health professionals.…”