The politics of disclosure: prenatal testing for intersex variations in Belgium

In 2017, Belgium became the first European country to offer first-tier noninvasive prenatal testing (NIPT) to all pregnant persons for free. Initially designed to detect trisomy 21, 18 and 13 within the first trimester of pregnancy, NIPT is also used to determine the chromosomal sex of the fetus. Hence the possibility to detect sex chromosome variations (such as X0 or XXY). In 2021, the National Bioethics Committee recommended against reporting these findings to prospective parents due to the lack of evidence on the ‘severity’ of the associated syndromes. However, some genetic centers do report them nonetheless. The contested issue is the possibility of terminating a pregnancy on the basis of such a finding. This presentation aims to interrogate current scientific practices related to the detection of sex variations in utero and the construction of the ‘intersexed fetus’ in Belgium. Based on interviews and ethnographic material, it explores health professionals’ ambivalent views on the disclosure of sex variations to prospective parents. The presentation suggests that this ambivalence points to broader cultural tropes about the changing meanings of sex and gender. However, this ambivalence tends to re-pathologize bodies in novel ways. On the one hand, my material shows that professionals foreground some specific medical risks related to sex variations. On the other hand, professionals put individual findings into perspective by emphasizing ‘natural’ variations within the general population. By bringing together disability, feminist and intersex studies, I show that this ambivalence stems from the conflation of two social norms embedded in the technology: the expectation of a fetus whose sex falls neatly into the gender binary and that of a ‘healthy’ and ‘able-bodied’ fetus.