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

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

Latest stories from i100
Have you tried new the Independent Digital Edition apps?
iJobs Job Widget
iJobs General

BI Developer - Sheffield - £35,000 ~ £40,000 DOE

£35000 - £40000 per annum + competitive: Progressive Recruitment: My client is...

Employment Solicitor

Highly Competitive Salary: Austen Lloyd: MANCHESTER - Senior Employment Solici...

Senior Risk Manager - Banking - London - £650

£600 - £650 per day: Orgtel: Conduct Risk Liaison Manager - Banking - London -...

Commercial Litigation Associate

Highly Attractive Package: Austen Lloyd: CITY - COMMERCIAL LITIGATION - GLOBAL...

Day In a Page

 

Opponents of Israel's military operation in Gaza are the real enemies of Middle Eastern peace

Gabriel Sassoon
Best comedians: How the professionals go about their funny business, from Sarah Millican to Marcus Brigstocke

Best comedians: How the professionals go about their funny business

For all those wanting to know how stand-ups keep standing, here are some of the best moments
Jokes on Hollywood: 'With comedy film audiences shrinking, it’s time to move on'

Jokes on Hollywood

With comedy film audiences shrinking, it’s time to move on
Edinburgh Fringe 2014: The comedy highlights, from Bridget Christie to Jack Dee

Edinburgh Fringe 2014

The comedy highlights, from Bridget Christie to Jack Dee
Evan Davis: The BBC’s wolf in sheep’s clothing to take over at Newsnight

The BBC’s wolf in sheep’s clothing

What will Evan Davis be like on Newsnight?
Finding the names for America’s shame: What happens to the immigrants crossing the US-Mexico border without documents who never make it past the Arizona desert?

Finding the names for America’s shame

The immigrants crossing the US-Mexico border without documents who never make it past the Arizona desert
Inside a church for Born Again Christians: Speaking to God in a Manchester multiplex

Inside a church for Born Again Christians

As Britain's Anglican church struggles to establish its modern identity, one branch of Christianity is booming
Rihanna, Kim Kardashian and me: How Olivier Rousteing is revitalising the house of Balmain

Olivier Rousteing is revitalising the house of Balmain

Parisian couturier Pierre Balmain made his name dressing the mid-century jet set. Today, Olivier Rousteing – heir to the house Pierre built – is celebrating their 21st-century equivalents. The result? Nothing short of Balmania
Cancer, cardiac arrest, HIV and homelessness - and he's only 39

Incredible survival story of David Tovey

Tovey went from cooking for the Queen to rifling through bins for his supper. His is a startling story of endurance against the odds – and of a social safety net failing at every turn
Backhanders, bribery and abuses of power have soared in China as economy surges

Bribery and abuses of power soar in China

The bribery is fuelled by the surge in China's economy but the rules of corruption are subtle and unspoken, finds Evan Osnos, as he learns the dark arts from a master
Commonwealth Games 2014: Highland terriers stole the show at the opening ceremony

Highland terriers steal the show at opening ceremony

Gillian Orr explores why a dog loved by film stars and presidents is finally having its day
German art world rocked as artists use renowned fat sculpture to distil schnapps

Brewing the fat from artwork angers widow of sculptor

Part of Joseph Beuys' 1982 sculpture 'Fettecke' used to distil schnapps
BBC's The Secret History of Our Streets reveals a fascinating window into Britain's past

BBC takes viewers back down memory lane

The Secret History of Our Streets, which returns with three films looking at Scottish streets, is the inverse of Benefits Street - delivering warmth instead of cynicism
Joe, film review: Nicolas Cage delivers an astonishing performance in low budget drama

Nicolas Cage shines in low-budget drama Joe

Cage plays an ex-con in David Gordon Green's independent drama, which has been adapted from a novel by Larry Brown
How to make your own gourmet ice lollies, granitas, slushy cocktails and frozen yoghurt

Make your own ice lollies and frozen yoghurt

Think outside the cool box for this summer's tempting frozen treats
Ford Fiesta is UK's most popular car of all-time, with sales topping 4.1 million since 1976

Fiesta is UK's most popular car of all-time

Sales have topped 4.1 million since 1976. To celebrate this milestone, four Independent writers recall their Fiestas with pride