My Little Girl Has Cystic Fibrosis. Don't Tell Me That It Is Wrong for Society to Work to Prevent Disease ; as a New Embryo Screening Technique Causes Controversy, One Father of a Child with a Serious Genetic Illness Argues That Screening Is More Humane Than Allowing Further Children to Suffer

By Owen, Ed | The Evening Standard (London, England), June 2, 2006 | Go to article overview
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My Little Girl Has Cystic Fibrosis. Don't Tell Me That It Is Wrong for Society to Work to Prevent Disease ; as a New Embryo Screening Technique Causes Controversy, One Father of a Child with a Serious Genetic Illness Argues That Screening Is More Humane Than Allowing Further Children to Suffer


Owen, Ed, The Evening Standard (London, England)


THE technique is revolutionary. A faster new embryo test will help more parents ensure their children are born free of severe genetic diseases. The new technique is not simple for those involved, meaning that they will have to go through IVF treatment even if they have no trouble conceiving. But it holds out the possibility that thousands of children every year will be born healthy rather than with debilitating conditions and low life- expectancy.

So why have the usual group of selfappointed moralists reacted as they always do - with predictable outrage and mutterings about a "slippery slope"?

One outspoken critic said she was " horrified" by the idea. Others claim the process is tantamount to "playing God".

Such comments are an insult not only to the morality and dedication of those who strive to prevent and treat disease, but also to the agonising decisions that affected couples are faced with. Far from wanting to create designer babies, the goal of most parents faced with a choice between a healthy child and one whose life will be cut short by terrible illness is a somewhat more basic one.

I know because I have a daughter with cystic fibrosis (CF), Britain's most common life-threatening inherited genetic disease.

Cystic fibrosis is a condition that attacks the lungs and digestive system - and demands a rigorous daily ritual of physiotherapy and medication.

At almost four years old, our daughter is taking every day a cocktail of powerful antibiotics, vitamin supplements and enzymes to accompany her food.

She also has her chest beaten for 15 minutes twice a day to clear the lungs of sticky mucus.

She is doing well, and is fit and active.

But life expectancy rates are barely 30 years, and many sufferers in the last part of their lives need constant support to stay alive. While treatments have improved over recent years, there is no cure.

Our daughter's condition is down to the rather simple fact that both my partner and I carry the same faulty gene. That we each have this defect is neither rare (more than two million other people in Britain, about one in 25, do so, too) nor detrimental to our health. But any child we have has a one-in-four chance of being born with CF.

We knew none of this until after our first child had arrived. But when we came to discussing the possibility of a second, we were faced with a stark choice. Either we went for genetic screening of my partner's embryos created by IVF (know as Pre-Implantation Genetic Diagnosis - PIGD) or took a chance, with the possibility of termination at a later stage of the pregnancy.

For external arbiters of social and individual morality, such a choice between embryo selection - and therefore the disposal of embryos identified with CF - or possible abortion at 18 weeks or so would, no doubt, be an abhorrent one. Either course would be unacceptable.

Yet to take such a position is to deny altogether parents' legitimate ethical concern for the wellbeing of their children.

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My Little Girl Has Cystic Fibrosis. Don't Tell Me That It Is Wrong for Society to Work to Prevent Disease ; as a New Embryo Screening Technique Causes Controversy, One Father of a Child with a Serious Genetic Illness Argues That Screening Is More Humane Than Allowing Further Children to Suffer
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