Lucy Hunter’s tall frame is due to a genetic disorder. Yet she refused screening for her sons, who both now have the condition. She explains why she has no regrets

A first-person piece from the [UK] Independent:

… After genetic counseling, I considered the options. Although a prenatal test for Marfan’s exists, the idea of aborting my own child because he is, well, like me, was absolutely abhorrent. I looked into the more palatable idea of having a “designer” embryo implanted using IVF. Then I decided to take my chances on nature.

I have never regretted my decision, despite the guilt when I realised that Rufus, and Oisín, now four, had both been affected.
… Marfan syndrome is an interesting disorder, not just medically. It’s one that challenges our moral code. As religious leaders and politicians debate abortion on the grounds of “serious handicap”, I’m wondering whether Marfan’s fits this criteria. I suspect that for many people, it does. But why? Because we look different? Or has the idea of premature death become totally unacceptable to us?* Passing on Marfan’s is daunting, I know. But what I find more terrifying is the move towards a world where those with physical flaws and treatable illness are not allowed to be born. We may be creating a new world, but it certainly isn’t a brave one.

*People with undiagnosed Marfan’s syndrome have a life expectancy of about 32 years. Those who are diagnosed and get treatment have a life expectancy of about 72.

Information about living with Marfan’s syndrome accompanies the article.

This entry was posted on Thursday, March 20th, 2008 at 1:03 pm and is filed under cultural attitudes, ethics, families, genetics, international, News_2_Use, NOT2BEMISSED, parents, prenatal diagnosis, quality of life, siblings. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.