Testing for a hypertrophic cardiomyopathy gene mutation in embryos may soon be approved.
The Human Fertilisation and Embryology Authority (HFEA) is looking at whether to licence pre-implantation genetic diagnosis (PGD) for families affected by hypertrophic cardiomyopathy caused by all the MYBPC3 gene mutations.
PGD is a technique that enables people with a specific inherited condition in their family to avoid passing it on to their children.
It involves checking the genes of embryos created through IVF before they are implanted in the womb.
It gives seriously affected families the option of going through IVF and PGD if the affected gene has been found in the family.
The HFEAâ€™s licensing committee is due to make a decision on the mutations later this year. It has already approved PGD in arrhythmogenic right ventricular cardiomyopathy.
The application for the licence has come from a pgd clinic. Experts there will provide evidence to the committee about the condition.
But patient organisations and patients can supply information about the impact the condition has on patients and their families.
The CMA will be making a joint submission with the Genetic Alliance UK, a charity of over 150 patient organisations supporting all those affected by genetic conditions.
Others can contribute to the debate by emailing the authority at email@example.com before May 16th, 2013.
Before granting approval, the committee must be satisfied that there is a significant risk that a person with the mutation has a significant risk of having or developing a serious illness or disability, serious enough to warrant PGD.
Families affected by HCM have been allowed PGD in the past on a family by family basis, but that was before the current licensing procedures came into force in 2010.
Currently the condition does not have a necessary licence.
For a family's experience of PGD, see here.
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