Informing on prenatal screening for Down syndrome prior to conception. An empirical and ethical perspective

Abstract

In most Western countries, information on prenatal screening for Down syndrome is provided in the first-trimester of pregnancy. The purpose of this study was to examine whether this information should additionally be provided before pregnancy to improve the informed decision-making process. In an empirical study, we obtained data from pregnant women with respect to their preferences regarding information on prenatal screening preconceptionally. Questionnaire data (n ¼ 510) showed that 55.7% of responding women considered participating in prenatal screening for Down syndrome before pregnancy. 28.0% of women possessed information on prenatal screening preconceptionally. 84.6% preferred not to receive information preconceptionally in retrospect. In an ethical analysis, we elaborated on these preferences by weighing pros and cons. We considered two arguments against the provision of information on prenatal screening preconceptionally: women's preference to receive information in a step-by-step manner, and the risk of providing a directive message. We identified three reasons supporting its provision preconceptionally: the likelihood of making an informed decision could, firstly, be increased by ''unchaining'' the initial information from possible subsequent decisions, and, secondly, by providing women sufficient time to deliberate. Thirdly, the probability of equal access to prenatal screening may increase. To conclude with, we propose to incorporate an information offer on prenatal screening for Down syndrome in preconception care consultations. By offering information, instead of providing information, prospective parents are enabled to either accept or decline the information, which respects both their right to know and their right not-to-know. Key words: information on prenatal screening; down syndrome; preconception care consultation; informed decision-making; medical ethics; right not-to-know INTRODUCTIONPreconception care is a set of primary interventions that identify and modify biomedical, behavioral, and social risks to a woman's health and future pregnancies [Centers for Disease Control and Prevention (CDC). National Center on Birth Defects and Developmental Disabilities, 2006] Preconception care aims to optimize the health of the future child and to improve maternal health 485 [Health Council of the Netherlands, 2007b]. Information on prenatal screening for Down syndrome is commonly provided after conception, during the first-trimester of pregnancy. Many Western countries have policies or recommendations for prenatal screening for Down syndrome, in which either women of advanced age are offered invasive diagnostic testing (chorionic villus sampling or amniocentesis), or in which women, irrespective of their age, are offered non-invasive risk-assessment tests in the firsttrimester of pregnancy (nuchal scan, often combined with maternal serum evaluation) [Boyd et al., 2008;EUROCAT, 2010]. The latter screening tests provide an individual risk estimate of carrying a child with Down syndrome, and may be foll...

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