Marie-Sophie Müller

Institute for the History of Medicine and Science Studies, University of Lübeck

Since 2012, non-invasive prenatal testing (NIPT) has become an established tool, providing pregnant people with simple and low-risk access to genetic information about the foetus. In modern medical practice, prenatal tests have become a widely used method for the early detection of potential genetic abnormalities. However, whilst these tests provide pregnant women with more information about the health of the foetus, they also give rise to social and emotional challenges that have remained largely unexplored.

The first twelve weeks as a special time – During the first twelve weeks, the study participants spoke little or not at all about their early pregnancy. Rather, this initial period was characterised by silence, uncertainty and taboo. Fears and concerns, particularly in relation to prenatal tests, miscarriages or terminations, often went unspoken and led to isolation. The early timing of the NIPT clashed with perceived uncertainties and the legal pressure to make a decision under Section 218a, meaning that the first trimester was experienced as an exceptional timeframe for prenatal diagnosis. The term ‘isolation’ refers , amongst other things, to the absence of interactive support when coming to terms with NIPT. There was so little dialogue within the social structures of the women’s lives that some found themselves left to their own devices and isolated in their struggle to come to terms with the situation. Ultimately, this form of isolation led to a significant shift in decision-making responsibility onto the pregnant women themselves.

Isolation in a social context: The collective silence surrounding early pregnancies, as described in the interviews, led to the isolation of pregnant people. Pregnancy and prenatal testing, including non-invasive prenatal testing, were mostly kept private. Reasons for this included the need for personal reflection, a social consensus against early disclosure, and the taboo surrounding miscarriages and terminations. The lack of sharing of experiences intensified the feeling of isolation and led to an unequal distribution of psychological strain.

Isolation within the partnership: The partnerships of the women interviewed proved to be a central, and at times burdensome, frame of reference for decision-making regarding prenatal diagnostics. As partners were often the only people with whom the women could discuss the matter, the responsibility for the decision became concentrated within the partnership. The women described feeling under intense pressure to make a decision, particularly when there was disagreement about the possible consequences of different test results. At the same time, they feared losing their partnership and being left to face the decision and its consequences alone.

Isolation in gynaecological care: The women often went into the NIPT process without sufficient information and knew neither exactly what was being tested nor what the result would mean. The results were communicated briefly and non-committally over the telephone. Whilst normal findings were perceived by the women as unproblematic, abnormal results led to strong feelings of being left to cope alone. The gynaecologist was seen as the key point of contact for understanding, guidance and emotional support during this phase.