Interdisciplinary Workshop, 5th February 2025:
Ethical questions of pregnancy management following a positive NIPT/PND result
St Luke’s Chapel
This was the second and final workshop of an empirical bioethics project entitled “Non-invasive prenatal genetics and genomics in England, France and Germany - Exploring practical ethical issues 'on the ground'” (PI: Ruth Horn, Ethox Centre, Oxford; IEHHS, Augsburg; Researcher: Adeline Perrot, Ethox Centre; Funding: ESRC).
Following a first workshop in 2022 that focused on the ethical issues of non-invasive prenatal testing (NIPT) in relation to the process of offering and communicating about the screening test as part of routine clinical care, this second workshop focused on ethical issues in relation to pregnancy management, including decisions to terminate the pregnancy in the event of a positive test result (and/or prenatal diagnosis (PND)). After Ruth Horn welcomed the participants and opened the day, Claudia Wiesemann (University of Göttingen, Germany) gave the first talk emphasising the importance of putting the woman at the centre of ethical debates around reproductive decisions. Rather than focusing on an ethics of the beginning of life and the embryo/fetus, she argued in favour of an ‘ethics of the midlife’ that acknowledges the bearing reproductive decisions have on women in their midlife. The following first panel (chaired by Angus Clarke, Cardiff University) discussed how NIPT can impact pregnancy decisions, and in particular decisions to continue or terminate pregnancy. It was highlighted that these decisions can significantly challenge women’s relations with their partner and other children (Christoph Rehmann-Sutter, University of Lübeck, Germany). Furthermore, the decisions themselves can be influenced by the existence and focus of screening programmes, and the way clinical professionals’ implement these to detect fetal anomalies during pregnancy (Valérie Seror, Institut Imagine, Paris). The second panel (chaired by Tara Clancy, University of Manchester) paid attention to how professionals’ moral convictions, social and medical norms, legal limits and taboos around terminations of pregnancy for fetal anomaly can burden women and limit their options of action following a positive NIPT result. Focus was put on socio-cultural and legal differences between England, France (Adeline Perrot, Ethox Centre) and Germany (Tamar Nov-Klaiman, University of Augsburg, Germany). This panel was completed by insights into the diverse perspectives of people living with a particular genetic condition regarding prenatal testing and termination of pregnancy for fetal anomaly (Felicity Boardman, University of Warwick). The third and last panel (chaired by Sandy Starr, Progress Educational Trust – PET) provided insights into women’s experiences after a positive NIPT result, in the context of expanded screening panels (Lidewij Henneman, Amsterdam UMC), and following deliberative counselling (Jane Fisher, Antenatal Results and Choices). Concluding remarks and a summary of the presentations were presented (Carine Vassy, University Paris 13, France and Angus Clarke) and discussed by all participants. It was concluded that the question of stigma in relation to pregnancy decisions in the case of fetal anomaly – stigma of both termination and continuation of pregnancy – is still insufficiently understood and further research is required. As an output of this meeting, Ruth Horn will lead, in close collaboration with all invited speakers and chairs, an application for a 3-day workshop at the Brocher Foundation, Switzerland.
The workshop was co-organised by Adeline Perrot (Ethox Centre) and Ruth Horn, and wonderfully supported by Isaac Cheng (Ethox Centre) and the team of Medical Humanities Oxford.
Medical Humanities Hub, TORCH Research Hubs
