The ultrasound technician put her hand on my arm and said the words every expectant mother hopes she will never hear: “I’m afraid there is something wrong with the baby.”
Within an hour it was clear that a skeletal dysplasia would claim my daughter’s life either at birth or shortly after. It was also clear that everyone expected me to have a termination.
Hardly anyone in Western culture disputes the wisdom of prenatal screening. It is a practice that most of us take for granted. But what are the long-term effects?
As a social practice, prenatal screening is framed as morally neutral. Scans are voluntary. It is the informed and consenting parents who decide how to act on the basis of the information they receive. At twenty weeks there were only two things I knew about my daughter, both of them scientifically derived facts: her physical abnormality and her biological sex. These facts were discovered simultaneously in a routine scan in which only two questions were asked as if they were of primary importance: Does this child have a healthy body, and is this child male or female?
Prenatal screening relies on society’s evaluation of what is acceptably normal. In cases of fetal abnormality, termination is assumed to be both right and necessary for a child whose quality of life might prove suboptimal according to this definition, even though in reality this is a highly subjective determination. Only a tiny minority of parents face the heartache of fetal abnormality. But screening to find out whether or not a child is healthy legitimates the idea of terminating the life of a child whose physical capacities are suboptimal, and this idea affects every one of us. It is reinforced by a legal structure that not only makes this idea plausible but also permissible right up to full term.
In 2021, Heidi Crowter, a twenty-six-year-old woman with Down syndrome, exposed the myth of screening as a neutral practice when she took the UK government to court on the grounds of “downright discrimination.” Crowter’s case is unambiguous. In the United Kingdom, healthy babies cannot be legally aborted after twenty-four weeks, but no such restriction applies in the case of sick babies. Over 90 percent of parents who discover their child has Down syndrome choose never to see their child alive. The law legitimates an invidious double standard. In an age that prides itself on upholding the rights of people with disabilities, our failure to critique the latent assumptions that lie at the heart of prenatal screening is startling and contradictory.
The practice assumes certain ways of evaluating personhood, defining autonomy, imagining agency, and forming identity. These assumptions purport to be universal when they are in fact subject to political, economic, and cultural forces that vary widely from one society to another. In many non-Western contexts, and in diverse subcultures within Western societies, revealing the sex of the child ahead of time places the unborn at risk of termination on grounds of gender. Pregnant women in these cultures face acute tensions and even dangers when forced to navigate the repercussions of prenatal screening. Yet in spite of this fact, and in the face of growing evidence of the long-term anguish caused by gender stereotyping, we still allow a gendered lens to filter our perception of our children from the outset, even before they are born. In so doing, we become prey to policymakers with a vested interest in ensuring that a limited set of assumptions appear to be universal and morally compelling.
Prenatal screening relies on society’s evaluation of what is acceptably normal.
For policymakers the potential of prenatal screening lies in its power to control the overall health of a population in order to better allocate scarce fiscal resources. Never before has the pressure to mitigate the long-term costs of social care been greater. Government-funded screening programs using affordable and physically noninvasive methods, to which citizens voluntarily consent, have remarkable potential to reduce healthcare costs by eliminating the weakest members of society before they are born. Social engineers have long coveted the power to reshape at source the character of entire populations – a power to which medical insurance firms are becoming increasingly attuned for their own financial gain. Neither government policymakers nor insurance firms are known for championing human uniqueness, and history suggests that in both instances we should be vigilant. It is precisely because such agendas are tacitly condoned and uncritically accepted in the practices we adopt day by day that they become difficult to challenge and debate.
Prenatal screening practices reflect – but also shape – our perceptions of what it means to be human. By making personhood contingent upon the majority definition of normality, these practices undermine the core values on which our civil society depends – the fundamental dignity and equality of all persons. Precious though we believe our children to be, screening encourages us to treat people as if they were commodities over which we retain absolute power of choice. We choose the timing of birth and the number of children we desire; and increasingly, prenatal technologies are opening the way for us to select the gender and the genetic makeup of our children as well. Meanwhile, at a societal level, we are becoming less rather than more able to live with actual difference.
For my family the consequence of prenatal screening was an unbearable choice. When presented with information we never imagined we would face, we were forced to choose. But we discovered that although a termination was presented in the language of choice, it was the only recommended medical option. Hospital budgets were weighted towards fertility technology, not obstetric care for high-risk pregnancies. When I chose to carry my baby to term, the quality of my subsequent care was adversely affected by institutional policies that anticipated a certain parental choice and no other. I encountered a system shaped by a certain kind of expectation.
Prenatal screening is not a neutral practice. It sends a message. Though rarely stated explicitly, this message is powerful and formative. It conditions our expectations and creates a plausibility structure that is increasingly difficult to resist.