Seeing Double – Personal Thoughts on Genes, Genetics and Cloning

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I don’t like the idea of designer babies; it must be wrong to select for a specific sex, good looks or intelligence. On the other hand I don’t see why we shouldn’t select on medical grounds, either to help a sibling or to avoid a serious hereditary condition. Like everything there are grey areas, and I would hate to think that in the future it would become compulsory to select on medical grounds. After all if there is an option to screen out some forms of disability or disease why should the state use our money to fund a lifetime of care for a child whose parent chose not to be screened or to keep him or her anyway? My husband has spina bifida, I guess he would prefer not to have it, but it doesn’t define him as a person and if the choice was to live with spina bifida or never to have lived he would choose life. My son has Autistic Spectrum Disorder in the form of Asperger Syndrome, life isn’t always easy for him but he would choose to be himself rather than to be ‘normal’. Apparently a number of famous and very able people have had Aspergers, so screening that out could be a loss to the world.

My first husband died of bowel cancer when he was just 38. The illness was wicked and his decline over the three months of his illness was terrifying. In June he was an apparently fit, vigorous company director who loved life and lived for his family. By September when he died he was an emaciated, yellow alien, bloated by lymphedema with his liver so massively swollen that it was practically bursting out of his chest. His sharp mind had been replaced by confusion, fear and paranoia. It was beyond endurance for him and it was devastating for me and our children, there was nothing any of us could do to help him. A month or so before his death, my husband and I were told that there was a strong possibility that his cancer was genetic and our children would have to be monitored when they were grown up. At the time it was almost more than I could bear, but we have had lots of help and advice from our regional genetics service and I know that if they are monitored closely any cancer will be caught early and will be responsive to treatment. Maybe one day we will know for sure if they are at risk or not.