A long road: the first baby born without the BRCA-1 genetic fault

thumbnailYou may already know that one of our crowning achievements here at CRGH was our involvement in the birth of the first baby in the UK to have been born without the BRCA-1 gene. What you may not know is that achieving this triumph was a long, challenging road – one that was filled with a number of legal hurdles, medical innovations, and ethical debates.

p

Let’s start at the beginning: The BRCA-1 gene is commonly referred to as the ‘breast cancer gene.’ It’s a gene that we’re all born with, but when there is a fault (or ‘mutation’) in the gene, a woman’s risk of developing breast cancer jumps significantly. So, if a person is born without this genetic change in the first place, (his or) her chance of developing breast cancer is not increased and if s/he carries such a genetic change, it will be significantly reduced.

p

Legal hurdles

One of the hot ethical debates over eliminating the BRCA-1 genetic mutation from being passed  was that breast cancer is an illness that usually manifests later in life. Therefore, a woman with a mutated BRCA-1 gene could live well into her 30s without even developing the disease – or ever at all. However, with a BRCA-1 mutation, the risk of developing breast cancer jumps to 80%, which is very much higher than the average risk. A baby born without this gene mutation would allow the prevention of the increased risk of breast cancer from birth – an exciting medical possibility!

p

Because of this ethical question – as well as the fairly new technology used to eliminate the gene – the debate went all the way to Parliament. For more than two years there was a national discussion and consultation and much Parliamentary debate before the necessary laws were passed that allowed us to take measures to select embryos without the BRCA-1 genetic mutation. Once those laws went into effect, we immediately applied with the Human Fertilisation and Embryology Authority (HFEA) for the proper licensing. Once granted, this allowed us to work with the couple who became the proud parents of the first baby without the BRCA-1 genetic mutation by means of PGD. Happily, they have since gone on to have another child with the help of CRGH’s PGD.

p

Medical innovations and ethical concernsp

This process has also been the subject of much debate. Many ask what are the ethical implications of eliminating the BRCA-1 genetic change in a baby – in other words, is CRGH “playing God?” The short answer to that is absolutely not. We want to make it very clear that we make no alterations to any genes, but work to identify the location of a genetic mutation and avoid any embryos that have changes which would result in an affected baby (or adult). We do not make any new genes, new embryos, or a different baby. We thus enable couples to implant an embryo that has the best chance to become a healthy baby.

p

All couples seeking PGD are encouraged to consider if this process is the best one for them. We recognise that it is not the only option. For some couples, perhaps especially those facing a high chance of having a child who may go on to develop a serious condition later in life, it offers a path with less anxiety than the alternatives, For many, however, it will not be the right choice and although everyone should have had the opportunity to explore other avenues before coming to CRGH, we mention alternatives again when we meet and offer counselling, as this may help them discern the best  way to go forward.