Genetic Testing – Telling the Children

The Family section of Saturday’s Guardian had an excellent article on inherited cancer. It was taken from a book called “Singing the Life: The Story of a Family Living in the Shadow of Cancer” by Elizabeth M. Bryan. The author died of pancreatic cancer in February this year. You can read the article online here.

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What makes this article so interesting is that Elizabeth had experienced cancer as a relative (two of her sisters were diagnosed with cancer) and as a patient (she was diagnosed with pancreatic cancer in 2005) and her training as a pediatric doctor allowed her to explain the details of genetic testing with a sympathy that is often lacking in the standard textbooks.

The article includes an open letter to her nieces and nephews that explain that as some members of their family carry the BRCA1 gene mutation they too could be more likely to develop cancer and that they could, if they wanted to, have a test to find out if they too have the faulty gene. She then goes on to explain, that due to recent changes in legislation if you do carry the faulty gene you have the option (and it is only an option) of having children by IVF (in vitro fertilisation) which would allow you to have PGD (Preimplantation Genetic Diagnosis) meaning you could pick an embryo that did not have the faulty cancer gene, ensuring your child would not inherit the BRCA1 mutation. Of course, this is no guarantee that your children will never develop cancer, it just means they are highly unlikely to develop cancer because of the BRCA1 mutation (there are lots of other genes that can also give rise to cancer and we can’t test for them all)

As I’ve said this is a good article because the science is explained clearly, without being condescending and at the same time Elizabeth Bryan keeps in mind the personal costs of such difficult decisions on her own family. As more genetic tests become available, such decisions are likely to affect many more families in the future.