Would I want my daughter 'cured'? The dilemma of a father whose child has Down's Syndrome

A medical breakthrough presents startling potential but ethical challenges

Share
+More

Out of America, there is always something new. The latest example of that country’s unparalleled contribution to medical progress is the announcement by the University of Washington that its scientists had succeeded in removing the extra copy of chromosome 21 in cell cultures derived from a person with Down’s Syndrome. Since it is the possession of three, rather than two, copies of the 21st chromosome that defines Down’s Syndrome, it is clear that this breakthrough has startling potential for addressing a condition which is far and away the commonest form of congenital disability.

The senior gene therapy researcher on the project, Dr David Russell, was properly cautious: “We are certainly not proposing that the method... would lead to a treatment for Down’s Syndrome. What we are looking at is the possibility that medical scientists could create cell therapies for some of the blood-forming disorders [such as leukaemia] that can accompany Down’s Syndrome.”

Nonetheless, for parents of children with the condition (and I am one), this news inevitably raises the question: what does it mean to have a “cure” for Down’s? And, perhaps more difficult: would we even want our children to be – for want of a better word – normalised? There is, of course, an existing so-called treatment of the condition: elimination by abortion, following a “positive” result in amniocentesis. Yet this invasive method of inter-uterine testing carries a risk of miscarriage. This perhaps explained the headline two months ago over a Daily Telegraph report on a new, non-invasive method: “Blood test for Down’s could save 300 babies’ lives a year.” Clearly, the embryos with Down’s that were correctly identified and dispatched did not count as real babies.

This “eradication” of Down’s Syndrome (as another article on the new test cheerfully described it) is not actually a treatment at all. The condition would continue to recur with the same frequency as it always has done: all that would have changed is that the patients would never emerge.

Gene therapy, however, would be a genuine attempt at treatment and cure; but also colossally complex, at the outer fringes of the feasible. Most genetic conditions now being worked on by medical scientists tend to be those caused by a single gene, usually one mutation within one amino acid; but as Professor Roger Reeves, of Johns Hopkins University Medical School, told The New York Times last year, “With Down’s Syndrome, you have an extra copy of all 500 or so genes on Chromosome 21”.

Yet imagine if someone at Washington or Johns Hopkins really did discover a way of therapeutically removing all the extra genetic information within the 21st chromosome that causes the mental disability within the person with Down’s: would this be an unmitigated blessing for either the child or its parents?

You might think so; but in a recent survey of Canadian parents with Down’s Syndrome children, 27 per cent said that if there were a “cure” for their offspring’s condition, they would not use it. A further 32 per cent said they were unsure if they would take advantage of it. This result was described as “surprising” by The New York Times; but it is not really surprising at all. My 17-year-old younger daughter, who has the condition, is what she is; and that is the person her parents and sister know and love. If she were genetically re-engineered, would she be the same person? She would certainly be very different; with the ability to count or read a clock, possibly even to penetrate the secrets of calculus: but those are not the sort of attributes which define what we love in those to whom we are closest.

In all this, it is important to bear in mind that Down’s Syndrome is not a disease, infectious or otherwise: neither, despite the lazy shorthand of some pseudo-medical commentary, do people “suffer” from Down’s Syndrome. It is true that people with disabilities, especially those visible to the naked eye, can often be teased or bullied, and this certainly causes suffering to the victim; but it is perverse to assert that the appropriate treatment for this form of suffering is that the stigmatised rather than the stigmatisers are the people who should be made to change their fundamental identity.

For the same reason, it is depressing that some parents of children with Down’s Syndrome should feel it right to have plastic surgery performed on their son or daughter, so as to make them look more “normal”. This was the theme of a television documentary some years ago, called Changing Faces. I recall watching it with horror. Partly, I suppose, this is because, like any parent, I see my own children as beautiful beyond compare (whatever anyone else might think); but also because, again, to force a child to have his or her features surgically rearranged in order to conform to some sort of social convention is to honour prejudice.

None of this is meant as a criticism of the attempts by American scientists to find a treatment for Down’s Syndrome, especially as it presents itself as an alternative to the eradication policy more central to medical practice in this country. Nonetheless, just as Americans tend to overuse anti-depressants, in the vain belief that continual happiness is the natural state of mankind, they seem to have a national tendency to want to change anything that does not seem perfect.

That is a mighty force for progress: but it is not the secret of life.

React Now

iJobs Job Widget
iJobs General

Senior Employment Solicitor - Birmingham

Excellent Package: Austen Lloyd: This is a senior appointment with huge potent...

Teaching Programme Officer with Qualified Teacher Status

£28000 - £31500 per annum + benefits: Randstad Education Newcastle: Permanent ...

SAP FI-CA Consultant - up to £58k

£50000 - £58000 per annum + Benefits and Bonus: Progressive Recruitment: SAP F...

PHP/ Drupal Developer - £35k - WC

£30000 - £40000 per annum + BENS: Progressive Recruitment: Drupal Developer A ...

Day In a Page

Read Next
 

Austerity has hardened the nation's heart

Yasmin Alibhai Brown
Questions: Eric Schmidt is lying low after the PAC branded his firm 'devious'  

The moral case on tax avoidance is overwhelming - and we all know Google wants to do the right thing

Owen Jones
The price of pacifism: Refusing to go to war is finally being recognised as a brave act

The price of pacifism

From the Second World War refusenik to the 19-year-old Israeli, Holly Williams talks to five people who risked shame and suffering to take a stand as conscientious objector.
'It was mass hysteria': Jason Isaacs on groupies, theatre bores and snogging James Bond

Jason Isaacs: Groupies, theatre bores and James Bond

To millions, Jason Isaacs is one of Harry Potter's arch enemies – but his wife prefers him as a Scottish TV detective.
Notes from a small island: Is Sealand an independent 'micronation' or an illegal fortress?

Sealand: 'Micronation' or illegal fortress?

Thomas Hodgkinson spent a week at the tiny platform off the Suffolk coast to find out.
Not a bad bone: Mark Hix cooks with cutlets and ribs

Mark Hix cooks with cutlets and ribs

If you ignore cutlets and ribs, you'll risk missing out on some delicious and easy meals, says our chef.
The experts' guide to summer: From getting fit for the beach to recreating that Olympic buzz

The experts' guide to summer

From getting fit for the beach to recreating that Olympic buzz
Sex, drugs and fast cars: The legend of James Hunt has set Hollywood hearts racing

Legend of James Hunt has set Hollywood hearts racing

Early glimpses of Ron Howard's film Rush suggest it will portray Hunt as a high-living lothario, with an insatiable appetite for partying.
Macklemore: 'I don't have moderation when using drugs and alcohol. It was hurting my life'

Macklemore: 'I don't have moderation'

The next Vanilla Ice or the next Eminem? Macklemore doesn't have a record contract – but he does have the UK's biggest-selling single of the year.
Don't be shy: Bill Granger's Sri Lankan recipes

Don't be shy: Bill Granger's Sri Lankan recipes

Sri Lankan cuisine is light, sunny, wonderfully spiced – and so easy to cook from scratch. Just as soon as you've broken into the coconut, that is.
Sir James Dyson’s latest project: Cleaning up hospitals

Sir James Dyson’s latest project: Cleaning up hospitals

Doctors are hailing the revamp of a Bath neonatal unit, where babies sleep more and feed better, as the model for patient care
One man returns to Argentina's town that drowned

One man returns to Argentina's town that drowned

Epecuen was submerged under 10 metres of water in 1985. Now the floods have gone – and 83-year-old Pablo Novak has moved back in
The real thing? Historian publishes Coca Cola's 'secret formula'

The real thing?

Historian publishes Coca Cola's 'secret formula'
Gordon Ramsey's worst nightmare: A restaurant he cannot save

Gordon Ramsay's worst nightmare: A restaurant he cannot save

The pugnacious chef finally met a shambolic restaurant he couldn't save. John Walsh on when TV makover refuseniks fight back
Join Ryanair! See the world! But we're only paying you for nine months a year

Join Ryanair! See the world! But we're only paying you for nine months a year

Glamorous myth of the flight attendant lifestyle undermined by angry employee's claims of 'exploitation'
Braising saddles: Did the recent furore scupper sales of horse meat? Neigh, far from it!

Braising saddles: How to cook horse meat

Did the recent furore scupper sales of horse meat? Neigh, far from it! Will Coldwell hoofs it to the kitchen.
Why bitters are back on the bar: A few little drops pack a big punch in cocktails

Why bitters are back on the bar

A few little drops pack a big punch in cocktails. No wonder we're learning to love them again...