Imagining and Preventing the Future Existence of Bodies with Variations in Sex Characteristics

The diagnosis of bodies with variations in sex characteristics (VSC) is a powerful social act that affects the social realities of patients, doctors, and families. This process includes an imagined connection between various biological characteristics and sociocultural norms of gender and fertility. We studied how Israeli medical professionals approach VSC in fertility and prenatal settings. Our research considered two contrasting trends: the growing recognition of VSC individuals’ rights to make decisions about their bodies and the increasing use of genetic testing to prevent VSC conditions. We conducted in-depth interviews with 27 biomedical professionals from different hospitals in Israel and collected data on preimplantation genetic testing cycles at three central hospitals in the country to identify VSC genetic conditions. The findings show how tensions and gaps regarding perceptions of fertility and bodies with diverse sex development exist among various specialists and their patients across different clinical interactions. We describe these gaps and their physical and social outcomes through three themes: “controlling the diagnostic emergency of VSC,” “secrets and concealment in the genetic diagnostic process,” and “imagining and preventing the existence of fertile bodies.”