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

Marleen Schoonen, Boukje van der Zee*, Hajo Wildschut, Inez de Beaufort, Guido de Wert, Harry de Koning, Marie-Louise Essink-Bot, Eric Steegers

*Corresponding author for this work

Research output: Contribution to journalArticleAcademicpeer-review

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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?=?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.
Original languageEnglish
Pages (from-to)485-497
JournalAmerican Journal of Medical Genetics Part A
Volume158A
Issue number3
DOIs
Publication statusPublished - Mar 2012

Keywords

  • information on prenatal screening
  • down syndrome
  • preconception care consultation
  • informed decision-making
  • medical ethics
  • right not-to-know

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