If you want to start a family, but are worried about passing on a genetic mutation, there are a few options you can explore. Besides adoption, these include:
Having your children as normal
A parent with a BRCA1/2 gene mutation has a 50% chance of passing it on to their child but you can have your children as normal. It’s possible that there will be better screening and treatment of ovarian cancer over the next few decades and any child born today will not be at risk of cancer for many years.
Pre-implantation genetic diagnosis (PGD)
This is a procedure that aims to allow families to avoid passing on an inherited condition to their children. It is only available to parents who haven’t already conceived naturally.
For this procedure you will have to undergo in vitro fertilisation (IVF). This involves collecting your eggs and fertilising them with your partner’s sperm in a laboratory. Cells from your fertilised eggs (embryos) are then tested for a gene mutation.
An embryo that does not have the gene mutation is then transferred to your womb and then your pregnancy is allowed to continue as normal. Any remaining, non-mutated embryos can be frozen for use in future cycles. The success rate for PGD is around 20%.
According to NHS England’s clinical commissioning policy ‘Pre-implantation Genetic Diagnosis’ up to three cycles are available on the NHS in the UK, but only one unaffected child will be funded. Referrals for PGD will need to go through the genetics service so, if you would like to consider this procedure, speak to your genetics specialist. For more information visit www.geneticalliance.org.uk.
Early on in a pregnancy it is possible to test for inherited genetic mutations. You will then have a choice whether to carry on with the pregnancy or terminate it early.
This is an invasive procedure with a slight risk of miscarriage. For more information about pre-natal testing and the options available to you, you can speak to your genetics specialist, gynaecologist or GP.
Egg or sperm donation
Depending on whether it’s the future mother or father that has the mutation then egg or sperm donation can be considered to avoid passing on the genetic mutation.
If the mother is the carrier of the mutation, eggs can be donated and if the father is the carrier, sperm can be donated. Once donated, IVF can be carried out.
These are NHS England guidelines (also followed in Wales). You can download a PDF of this guide containing NHS Scotland guidelines here. If you have any questions please contact Ross@ovarian.org.uk.