Women's wellbeing as an empty declaration? A qualitative exploration of challenges in accessing termination of pregnancy due to fetal anomaly in Germany.

Abstract

Background: The provision of prenatal testing through publicly funded healthcare systems, including non-invasive prenatal testing (NIPT), is frequently justified on the basis of supporting reproductive autonomy and informed choice. This includes decision-making around termination of pregnancy (TOP), including where it is due to a diagnosis of fetal anomaly (TOPFA). In Germany, TOP is regulated under the criminal code. However, it is exempt from punishment, if provided upon request from the woman up to 12 weeks after conception (14 weeks gestation) and following mandatory counselling. After this gestational stage, TOP may be provided where it is necessary to ensure the physical and mental wellbeing of the pregnant woman. However, there is a significant lack of clarity about how to interpret and apply this criterion. Fetal anomaly is often detected or confirmed after the time limit for TOP upon request has passed, which introduces uncertainty whether a fetal indication justifies legal access to TOP.

Methods: This study explores attitudes towards TOP, experiences with decision-making and access, and the implications of the German legal and regulatory frameworks. It draws on a qualitative semi-structured interview study, conducted between 2021 and 2022. Participants were 20 German professionals who have experience or expertise regarding the provision of NIPT, as well as 7 women with experiences of pregnancy, reproductive decision-making and the offer of NIPT. Interviews were conducted in German, and then transcribed, translated, and analysed using thematic analysis.

Results: Participants explored the importance of being able to access TOPFA; how the social positioning of TOP as a taboo procedure creates practical and psychosocial barriers to TOPFA access; the tension of who ultimately gets to make the decision about whether TOP can be provided; and how gestational time limits create emotional stress, frustrating informed decision-making and reproductive autonomy.

Conclusions: Our findings highlight that where prenatal testing is provided in the absence of guaranteed access to TOP, women's wellbeing becomes an empty declaration in German healthcare policy.