The slippery slope to eugenics

Published by The Daily Mail (1st March, 2017)

On the surface, it seems unalloyed good news: a new test for families that is simpler and more accurate than the current one in screening unborn babies for Down’s syndrome.

A new technique — Non-Invasive Prenatal Testing — is set to be rolled out across the NHS from next year after winning backing from ministers four months ago. The simple blood test, already available privately, has near perfect results by showing fragments of ‘rogue DNA’ in a foetus.

The test can be carried out early in pregnancy and reduces the need for more invasive procedures such as amniocentesis, which involves inserting a needle into the womb, that trigger 350 miscarriages a year.

And this is just the start. The long-term goal of this rapidly evolving technology is to extend it to universal testing of all mothers, ensuring babies can be screened before birth for a wide range of conditions.

All hail the magic of modern medicine! This is, surely, one more step forward in the astonishing scientific revolution transforming humanity to ensure we live longer and healthier lives.

But pause for a second. For this incremental advance — like so many in the genetic wonderland unfurling around the world — underscores how we are moving, with scarcely a murmur, into a new age of eugenics.

In a report published yesterday, the Nuffield Council on Bioethics warns that if it is made widely available, this test is likely to lead to a large increase in the number of babies being aborted on the basis of disability.

What it also points out is that the test, which can identify a foetus’s gender as early as nine weeks into pregnancy, could lead to a rise in abortions based on gender among various communities where there is a preference for male children.

These disturbing findings suggest we are hurtling towards a world that once sounded like science fiction; one in which imperfections are eliminated, disabilities eroded and parents enabled to pick idealised children from a medical production line.

Already some scientists (just like their scorned predecessors when disabled people were sterilised and killed) talk brazenly about the ‘immorality’ of producing children with disabilities.

Some senior doctors have suggested the NHS should work out whether caring for children with Down’s syndrome during their entire lives was ‘cost effective’.

The Royal College of Obstetricians and Gynaecologists, no less, even suggested that the cost of the new test could be justified on the basis that the NHS would be spared the cost of a lifetime of care of babies aborted as a result.

Surely, there needs to be more discussion about moves that raise deep philosophical questions for medicine, politicians and society.

Individually, some advances in genetics may make sense. Taken collectively, they herald fundamental change to the human condition. Think about the babies said to be ‘suffering’ from Down’s syndrome, caused by being born with three copies of the 21st chromosome, rather than the standard two.

Already, more than 90 per cent of women who receive a positive amniocentesis test for the condition opt for abortion, which is legally permissible for serious disability up to birth.

However, nearly half of all mothers offered amniocentesis refuse it because of its known risk of miscarriage. Even government advisers accept that when the new test is offered on the NHS, almost 100 more babies with Down’s syndrome are likely to be discarded before birth every year after the condition is identified.

In Denmark, which terminates more Down’s children than Britain (about 98 per cent of these babies are aborted), it is predicted the disorder will soon all but disappear.

Polls show most people see this as a good thing. ‘When you can discover almost all foetuses with Down’s, then we are approaching a situation in which almost all of them will be aborted,’ said Lillian Bondo, head of the Danish Midwives Association, two years ago.

I would never challenge a woman’s right to choose whether she keeps a baby, but aren’t we casually accepting that disabled lives are second rate if they are to be jettisoned so easily?

Such are the prevailing attitudes today, where we are bombarded by images of physical perfection, that even babies with cleft lips and club feet have been judged suitable for late termination when doctors have ruled there was ‘substantial’ risk of ‘serious’ disability.

Is this very different to the ‘gendercide’ practised in such countries as India, where six million female foetuses were aborted in the first decade of this century by parents who wanted a son?

The new blood tests will make this practice easier. In fact, for all the challenges of raising a child with disabilities — and I know them well from personal experience — many parents like me echo the words of one mother who said life would have been poorer if she had aborted her Down’s syndrome son.

Or the father from a small village who said his daughter, with the same condition, ‘makes everyone a bit bigger’ because she was such a character. As he added so rightly: ‘It would be such a shame if we lose the variety of life.’

Instead of celebrating the diversity of nature, we seem tormented by fear of difference.

I understand the concerns of those who desire a healthy baby. I shared them before the birth of my daughter 24 years ago with a rare genetic condition called CDKL5, which has left her blind, unable to walk or talk and in need of full-time care.

There is no doubt she has made our family’s life harder, not least given the deficiencies in state provision and wider society’s attitudes.

Yet when not suffering epileptic seizures she is a happy person, with a distinctive character and a wonderfully positive impact on those around her. Would the world be a better place had she not be born, or without so many people with Down’s, or without inspirational Professor Stephen Hawking and his motor neurone disease?

Of course not. Yet eradicating imperfections is the destination to which we are heading.

It has long been predicted: more than a quarter of a century ago, leading U.S. sociologist Troy Duster warned of a back door to eugenics created by ‘screens, treatments and therapies’.

Eugenics is one of history’s dirtiest words. A century ago, it was fashionable to argue people with ‘deficiencies’ threatened the strength of society. Some of the greatest intellectuals of the day backed segregation and selective breeding.

These hateful concepts went into decline after they led with deathly logic to the Nazi gas chambers — though incredibly, compulsory sterilisation of people with learning difficulties continued into my lifetime in some Nordic nations.

Now these ideas have been reawakened, with academics, doctors and scientists once again talking of expunging disabled people in the name of ‘progress’.

Some are well known, such as the biologist Richard Dawkins, who said it is ‘immoral’ to bring a child with Down’s syndrome into the world. ‘Abort it and try again,’ he advised callously on Twitter.

Australia’s Peter Singer, a leading moral philosopher, argued that if the death of a disabled baby leads to the birth of another child with better prospects, ‘the total amount of happiness will be greater if the disabled infant is killed’.

These zealots talk in chilling terms about ‘moral obligation’ to have healthy children, about ‘enhancing evolution’, of using medical technology to create ‘better’ people.

They say medicine is a fight against the brutality of nature and that the advances we are witnessing put fresh weapons in our arsenal.

Yet those preaching the gospel of modern eugenics dismiss how the diversity of human beings enriches society. The fact is our nation, like so many others, has failed to come to terms with disability — and that is why these scientific advances, while undeniably amazing, are also alarming.

They raise profound questions, but instead of debating them, there is a disturbing rush into a brave new world in which science and technology threaten to destroy our shared humanity.

Categorised in: Disability, Health, home page, Public policy