The FAP Gene Support Group

(Familial Adenomatous Polyposis)

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Should human embryos be screened for genetic defects? Page 2

Stephanie Zinser investigates this morally thorny issue.

History illustrates that many of our most famous names possessed a less-than-perfect complement of genes. Beethoven's mother, at the time she was pregnant with him, already had several children: three were deaf, two were blind, and one was mentally retarded. If she had had aborted the (also congenitally-deaf) Ludwig, the world would now be a musically poorer place. He's not the only famous person to have been born less than perfect. Aristotle suffered from epilepsy, as did Vincent Van Gogh. The poet and philosopher Homer was blind from birth. Toulouse-Lautrec suffered an incurable congenital bone disease. Stephen Hawking has motor neurone disease. One may wonder whether their handicaps played a part in driving them to excel so magnificently in other areas.

Many of us (with FAP or without) might not be here if we had been genetically screened out by our parents for things that we suffer from today. How many of us would prefer to not have existed at all? We: may not be: famous, but I bet we're all happy to be here.

Life is all about risk. Whether we realise it or not, we spend most of our lives minimising risk. We choose: a salad over chips to reduce our risk of obesity and coronary heart disease. We put our seat belts on to reduce the risk of death and injury in a car crash. We teach our children to read and write to (ultimately) reduce their risk of poverty in later life. The more certain a risk is, the more likely we are to do something to minimise it.

And this is why the families with FAP have been sanctioned to screen genetically against the disease that they carry: there is a very high risk that any chid carrying the FAP gene will develop the disease, and many of them wish to minimise that.

The Red Lion Group has a significant number of members with FAP, making the issue particularly relevant to us. So where do the answers lie? Is generic screening the ultimate solution, or can it bring its own and complex issues? Ultimately, is it right or is it wrong? Socially desirable or undesirable?

Genetic screening and embryo selection is, to the many who carry the genes for debilitating and fatal diseases, a godsend. It offers an escape route, a hope for freedom from a curse that you and your children don't deserve. People that are affected say it's easy for those who morally object to screening to pontificate, but unless you have actually experienced the vulnerability and torture of watching your children suffer or die from something you unwillingly gave them, it is unfair and inappropriate to comment on the rights and wrongs of those who do suffer.