Last week, Health and Social Care Minister Kate Beecroft MHK told Tynwald that ‘cell-free DNA’ (cfDNA) testing, a new form of non-invasive prenatal test (NIPT) for disabilities in unborn children, will be made available to pregnant women on the Island.
HEAR echoes the concerns that have been expressed by disability rights activists on the Island, and also by the British Don’t Screen Us Out campaign, who have been campaigning for a delay in the implementation of cfDNA in the UK until information and support for parents are implemented.
They have done so because in the UK, 90% of babies who are detected in the womb as having Down’s syndrome are aborted. Given that a study by the UK’s National Screening Committee has projected that 102 more babies will be detected in the UK, 92 of these can be expected to be subject to ‘termination’, and since 717 babies with Down’s syndrome were born in 2013 (the most recent figures), this would mean a 13% decline in the population of people with that condition in the UK annually.
This is all compared to the 25 fewer miscarriages that were projected due to a decrease in the use of more invasive prenatal diagnostic tests, which cfDNA implementation hopes to avoid.
The reason why there is such a high rate of abortion for Down’s syndrome and other disabilities, is the context of how medical care deals with such diagnoses. In the UK, as a Parliamentary Inquiry on Abortion for Disability in 2013 revealed, parents who receive a diagnosis of foetal disability are frequently given little information and support by doctors, but only a stark assumption that they will want an abortion, or even pressure to do so.
In the Isle of Man, there are indications that a similar situation operates. At the HEAR campaign launch in September, the Manx mother of a child with a club foot reported her own experience of feeling completely alone after being told the risk that her child could also have Down’s syndrome, but receiving no further information about what support was available to her. She reported being told “You’re too far gone for an abortion”, and it was only when she really persisted in asking for proper counselling and help that she met a midwife who gave her the help and calming reassurance she needed:
Rather than giving women ‘choice’, more prenatal testing in the second trimester could lead them going through the pressure that British mothers experience to abort their baby, rather than receiving the support they need to bear and take care of them. As disability rights activists point out, this leads to an ‘informal eugenics’, in which some communities of people are screened out before birth – the ultimate form of discrimination – due to a callous and uncaring medical system.
No analogous study has been done on the Isle of Man, and no consultation has been made about the potential effects of extending availability of cfDNA to the Isle of Man. Until this is done, and until it can be guaranteed that parents will be given informed and supportive help at a time of great stress, distress, and vulnerability, cfDNA should at least be delayed.
HEAR spokesperson Hannah Grove, said:
“This issue reminds us of the anti-woman, anti-child, and anti-equality implications of abortion, and what inhumane consequences would follow if the Island ever adopted the failed permissive law across.
Some might point out that receiving these tests would be voluntary. Yet in the absence of real caring support and information for parents, including perinatal hospice care for children with the most serious disabilities, cfDNA and other forms of NIPT can become means by which a lack of proper care forms a cover for the eugenic screening out of people with disabilities from our society through abortion. Especially if doctors put implicit or explicit pressure on parents to go through with that course of action.
As a recent report of the International Bioethics Committee (IBC) of the United Nations Educational, Social, and Cultural Organisation (UNESCO) has pointed out, “[t]he potential ethical disadvantages of NIPT can be summarised as routinisation and institutionalisation of the choice of not giving birth to an ill or disabled child”.
Abortion only distracts and detracts from giving true help to pregnant mothers and their children. Instead of enabling potential abuses, let us instead remove them altogether, and allow NIPT to enable us to better provide for every member of the Manx, and wider human family.
If the Isle of Man were to abolish eugenic abortion entirely, and provide the authentic compassion that palliative medicine and disability services can provide, we could lead the way in showing how a humane, egalitarian, and progressive 21st century nation cares for the most vulnerable members of our society and their families”.