Late last year, Heidi Crowter, a 27-year-old woman with Down syndrome, lost her court of appeal challenge over late-term abortions on grounds of serious foetal abnormalities. Abnormalities such as hers, that is.
The law in England, Wales and Scotland makes an exception to the 24-week time limit for abortion, permitting abortion all the way up to birth if there is ‘a substantial risk that if the child were born it would suffer from such physical or mental abnormalities as to be seriously handicapped’. That includes unborn children who have Down syndrome.
This rule, Heidi argued, ‘tells me that I am not valued and of much less value than a person without Down syndrome’. She’s right. Current legislation stigmatises those living with Down syndrome by sending out a message their lives are not worth living and less valuable than the lives of the able-bodied.
The judges at the court of appeal disagreed. The perception so hurtful to Heidi – one rule for her, another for her able-bodied peer – did not, the judges found, by itself contravene article eight rights (to private and family life, enshrined in the European Convention on Human Rights).
Heidi is not finished. She has now lodged a permission with the Supreme Court (and in due course would pursue this matter to Strasbourg). But already her case has thrown into the spotlight the painful ambiguities and profound controversies surrounding a practice firmly embedded within twenty-first century British society: genetic screening and selective abortion.
We are faced with the fact that pre-natal testing has become routine, as has the selective abortion which follows from it. In the UK 90 per cent of those diagnosed with Down’s syndrome are aborted. Before the advent of prenatal testing – whether via ultrasound technology (first employed for diagnostic use in 1956), or via amniocentesis (first introduced for Down’s syndrome in 1966), or via non-invasive pre-natal testing (available since 2012) – parents did not have to wrestle with the decision of whether to abort a child with physical or intellectual disabilities. Then, expecting parents of children with chromosomal deficiencies lived in blissful ignorance. Now, technology can place parents under an agonising burden – a fact which sufficiently impressed anthropologist Rayna Rapp in the 1980s to prompt her to confer the term ‘moral pioneers’ on such parents.