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Inside the Ethics Committee 2013: Genetic testing of children

Updated Friday, 16th August 2013

Should a mother's wish to test her children for a rare cancer be agreed to? Inside The Ethics Committee investigates.

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The shadow of a parent and child Copyrighted  image Icon Copyright: Jorg Hackemann | The BBC and The Open University come together to explore a range of challenges faced by medical ethics committees.

This week, Joan Bakewell tells the story of a mother keen to know if her children were at risk from a hereditary cancer.

Alan is in his late thirties when he is diagnosed with lung cancer. A genetic test reveals that he has Li Fraumeni Syndrome, a fault in a gene which predisposes him to cancer.

Alan starts chemotherapy but the treatment takes its toll. He and his wife Rachel try to resume family life - they have three children and Rachel is pregnant.

But over the coming months Alan's health deteriorates further and eventually Alan dies.

Soon after his death, Rachel gives birth to their baby.

Over the next eighteen months she's increasingly unnerved by the pattern that's now emerging in Alan's extended family.

Two of his siblings have died from cancer and there are tumours developing in other siblings, and in some of their children. Rachel is extremely worried that some of her own children, aged 2 to 12 years, may also carry the genetic fault.

Rachel visits a genetics service and asks them to test her four children for Li Fraumeni Syndrome. The genetic counsellor explains that children are not usually tested for this condition as there is little benefit in knowing - while there's a high risk of cancers developing in affected children, there is no reliable way of detecting these cancers early.

Rachel remains committed - she wants to know if any of her children carry the faulty gene.

Should the genetic team allow her to have her children tested?





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