Antenatal screening for fatal conditions such as Edwards syndrome involves the termination of pregnancy. But termination is also considered for non-fatal anomalies that risk a child being born with “serious handicap.”1 The Royal College of Obstetricians and Gynaecologists offers no “ethical guidance” on these decisions and suggests that staff must adopt a “non-directive” approach when advising couples.1 Yet for screening to be justified, the natural course of the condition must be understood and there should be an agreed policy of whom to treat.2 Do these criteria apply to antenatal anomaly screening?
Detailed ultrasound scanning at 20 weeks is in reality fetal screening for cardiac, abdominal, and renal anomalies and other defects, such as cleft palate. Similarly we conduct biochemical tests for Down’s syndrome, neural tube defects, and cystic fibrosis. Such screening and subsequent terminations are performed across Europe for many non-fatal anomalies.3 In 2010 in the United Kingdom there were 1173 terminations for anomalies after 22 weeks’ gestation.4 And because fetal viability occurs around this stage of gestation, feticide is conducted before delivery. These are extraordinarily painful decisions for couples to have to make. By contrast, if a child without disabilities is born after 22 weeks, neonatal life support is offered or given automatically. This is despite prematurity being associated with high levels of physical and mental disability.5
Termination is legal if there is “substantial risk” of “serious handicap” in the child.1 But these phrases are open to interpretation, with no legal definition1 and no guidance on whom to treat. And many anomalies are open to surgical correction, or the natural course is poorly studied. As for Down’s syndrome, the natural course is changing,6 with many adults living full and active lives. Pregnant women and couples are vulnerable, often entering into screening without giving much thought to the consequences. And when an abnormality is detected, they get little time or specific direction on the decision to terminate. Meanwhile, for “normal” children, life comes with no guarantees; the only certainty is a myriad of unpredictable and often devastating life events that await us all.
The paradox is that the Equality Act7 is prescriptive, directive, and utterly judgmental about what society should say and think with regard to discrimination against adults with disability. There is a cognitive and cultural dissonance towards disability in antenatal screening.
Is current antenatal screening out of step with modern society’s attitudes towards disability? Just because we can screen, does it mean that we should? I don’t know the answer to these questions, but I do know that we need more clarity. There exists an intellectual and ethical void in our current practice, and this is bad medicine.
↵Royal College of Obstetricians and Gynaecologists. Termination of pregnancy for fetal abnormality in England, Scotland and Wales. RCOG, 2010. www.rcog.org.uk/files/rcog-corp/TerminationPregnancyReport18May2010.pdf.
↵Wilson JMG, Jungner G. Principles and practice of screening for disease. World Health Organization, 1968. http://whqlibdoc.who.int/php/WHO_PHP_34.pdf.
↵EUROCAT European surveillance of congenital anomalies. www.eurocat-network.eu/accessprevalencedata/prevalencetables.
↵Department of Health. Abortion statistics, England and Wales: 2010. DoH, 2011. www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/documents/digitalasset/dh_127202.pdf
↵Dani C. Survival and major disability rate in infant born at 22-25 weeks of gestation. J Perinat Med2009;37:599-608.CrossRefMedlineWeb of Science
↵Equality Act 2010. www.legislation.gov.uk/ukpga/2010/15/contents
↵Kucik JE, Shin M, Siffel C, Marengo L, Correa A, for the Congenital Anomaly Multistate Prevalence and Survival Collaborative. Trends in survival among children with Down syndrome in 10 regions of the United States. Pediatrics2013;131:e27-36.FREE Full Text