Abstract
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.
Highlights
In the past decades, prenatal screening and reproductive technology have advanced rapidly
This website, as a last remark, would neither be a panacea for the general issues surrounding genetic screening, nor does it suggest to be exhaustive of all steps that could contribute to informed decision-making in the case of prenatal screening
As mentioned in the paper, since prenatal screening is a process that begins within the medical sphere, physicians are the first point of contact for parents
Summary
Prenatal screening and reproductive technology have advanced rapidly. This increases its quality and the odds that it might be used in practice This meeting gave important insights into how to tackle the more strategic questions linked to this project: what is the best way to enrich medical professionals with transdisciplinary perspectives, and how can we convince GPs and gynecologists to use this tool? To ensure GPs and gynecologists would notice the website, it would be good if known websites such as the ‘Vlaamse Vereniging voor Obstetrie en Gynaecologie’ (VVOG) contained a link to the tool Through this tool, the medical professional becomes aware of the fact that Down syndrome is more than a medical condition and an odds ratio; their view is broadened, which leads to a more nuanced perspective from which parents are informed about their prenatal testing results. The tool can help as a guide through counseling; it provides answers to parents’ questions and contains a list of relevant institutions to refer them to
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