Ethical questions of pregnancy management following a positive NIPT/PND result
Interdisciplinary Workshop
Oxford Ethical questions of pregnancy management following a positive NIPT/PND result
Perspectives from England, France, Germany and the Netherlands
Wednesday 5 February 2025, 9am - 3pm
St Luke's Chapel, Radcliffe Observatory Quarter
Free but registration required.
Convenors: Ruth Horn (Ethox Centre, NDPH) and Adeline Perrot (Ethox Centre, NDPH)
Contact: adeline.perrot@ethox.ox.ac.uk
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.
Programme
08:30-09:00 Coffee and tea
Introduction
09:00-09:10 Welcome (Ruth Horn, Universities of Oxford and Augsburg)
09:10-09:40 ‘Should we focus on ‘the beginning of life’? Some general remarks on the ethics-of-pregnancy discourse’ (Claudia Wiesemann, University of Göttingen)
Impact of NIPT on pregnancy decisions
09:40-10:00 ‘Decision-making about NIPT: women's moral reasoning in the absence of a risk of miscarriage in Germany’ (Christop Rehman-Sutter, University of Lübeck)
10:00-10:20 ‘The impact of NIPT on attitudes towards termination of pregnancy on medical (fetal) grounds’ (Valerie Seror, Inserm, University Aix-Marseille)
10:20-10:35 Joint Discussion (Chair: t.b.c.)
10:35-11:05 Coffee, tea, refreshments
Concerns and taboos around reproductive choices
11:05-11:25 ‘Women’s wellbeing as an empty declaration: when prenatal testing is enabled but abortions are restricted’ (Tamar Nov-Klaiman, University of Augsburg)
11:25-11:45 ‘French, English and German health professionals' concerns about women's pregnancy decisions following a positive NIPT result’ (Adeline Perrot, University of Oxford)
11:45-12:00 Joint Discussion (Chair t.b.c.)
Family perspectives on prenatal screening
12:00-12:30 ‘Identity Politics, Disability and Prenatal Testing in Families Living with Genetic Conditions’ (Felicity Boardman, University of Warwick)
12:30-13:30 Lunch
Women’s experiences after positive NIPT results
13:30-13:50 ‘Expanding horizons in prenatal screening: women’s experiences after positive NIPT results beyond the common trisomies’ (Lidewij Henneman, Amsterdam UMC)
13:50-14:10 ‘Practical insights about women’s decisions following a positive NIPT result’ (Jane Fisher, Antenatal Results and Choices (ARC))
14:10-14:25 Joint Discussion (Chair: t.b.c.)
Closing remarks
14:25-14:40 Carine Vassy (University Paris 13) and Angus Clarke (University of Cardiff)
14:40-14:45 Farewell (Ruth Horn)
Acknowledgements:
This workshop is kindly supported by Oxford Medical Humanities, the Ethox Centre, and the Economic and Social Research Council (ES/T00908X/1/). It is part of a broader research project on the ethical issues of NIPT in England, France and Germany: https://www.ethox.ox.ac.uk/Our-research/research-projects/nipt
