This workshop explores the ethical, social, legal and practical issues related to pregnancy decisions following a positive (abnormal) finding from a prenatal test such as non-invasive prenatal testing (NIPT). NIPT is a prenatal screening test provided by the private sector, and increasingly implemented in healthcare systems around the world. The test is used to detect pregnancies with high probability of the common trisomies (such as 21, 18 or 13) or, increasingly also, of a range of other rarer chromosomal anomalies (such as sex chromosome aneuploidies, microdeletions and duplications).
While it is recommended to confirm a positive screening result through further diagnostic tests (amniocentesis or chorionic villus sampling), some women may prefer to make pregnancy decisions based on the screening test. Decisions on pregnancy management following a positive finding in pregnancy mostly are binary: to continue with or terminate the pregnancy.
Whereas there is a consensus in most liberal democracies that these decisions should be taken autonomously and free of coercion, statutory and practical limits on the availability of termination in some countries may put pressure on pregnant women/couples to make these decisions in a matter of days or weeks. In some jurisdictions with restricted access to termination of pregnancy (TOP) after a certain gestational age, women may be pushed to decide before they can receive confirmation.
Furthermore, women/couples may face medical or institutional barriers to access TOP and be subject to social pressure or moral judgments regarding their pregnancy decisions. This raises questions about how to best support and understand reproductive autonomy following a positive prenatal test result.
Although many public healthcare systems cover NIPT and prenatal diagnosis (PND), clear post-test pathways supporting women in making decisions according to their values and needs, including access to TOP, are not always available, considered appropriate or acceptable.
The workshop aims to address this gap between the provision of prenatal testing and subsequent pregnancy management. It will focus on four countries that publicly fund NIPT – England, France, Germany and the Netherlands – and explore the experiences of women/couples and healthcare professionals as well as policies in place to better understand the ethical, social, legal and practical issues related to pregnancy management following NIPT/PND.