Mitochondial Donation

The Lily Foundation in the UK has, and continues to do outstanding work in the area of Mitochondrial Disease and were heavily involved in the recent successful UK parliamentary vote on Mitochondrial Donation, to allow affected families further reproductive choice and the opportunity to have a genetically related child free from Mitochondrial Disease

The following information and illustration has been taken from the Lily Foundation Website and details exactly what is meant by Mitochondrial Donation and how it works.

Mitochondrial Donation (aka Mitochondrial Replacement Therapy)

“On the 24th February 2015, The House of Lords voted to support the House of Commons to change legislation to allow Mitochondrial Donation. This technique gives families effected by Maternally Inherited Mitochondrial Disease the opportunity to have a baby free from the condition and eradicate the disease in that family.

In its simplest terms, the technique involves replacing the unhealthy mitochondria in a woman who carries the disease, with the healthy mitochondria from a donor woman, during the process of IVF.

The resulting baby would have all the genetic traits of the mother and father but would also have healthy mitochondria so would be free from disease. Kind of like replacing the batteries in a toy - the toy remains exactly the same, it just has the power to work properly.

An illustration by Rebecca Kent demonstrating the process of Mitochondrial Donation

Inside Mitochondria

A public consultation during 2013 showed broad public support for the technique and the government released draft regulatory guidelines in February 2014, which underwent a further 3 month consultation period in parliament.

Because this technique involves genetically altering an embryo to prevent disease (through replacing its unhealthy mitochondrial DNA,) the technique required a change in law in order to proceed.

The HFEA expert medical committee announced in June 2014 that this procedure was 'not unsafe' and 'potentially useful' and in July 2014 the Department of Health confirmed that plans to legalise the use of these techniques were to go ahead.

After further extensive scrutiny and three independent safety reviews, the regulations were finalised in December 2014 and were finally laid before parliament on 3rd February 2015.

The vote was passed with a resounding majority of 382 supporting the proposals and only 128 against.

The regulations were then laid before the House of Lords on the 24th February 2015. The whole word watched to see if the UK would lead the way in this ground breaking procedure. The Lords voted in favour, 280 to 48.

Mitochondrial Donation in the UK is now a reality. It can be taken out of the laboratory and offered to families that can benefit. Specialist centres will be allowed to apply for licenses on a case by case basis to offer this technique to severely affected families as a reproductive choice.

We are optimistic that doctors will be able to offer this to families in late 2015 giving them light at the end of a very dark tunnel with the first baby being born in 2016.

Together we did it, together we changed the law.”

We at The Katie Rose Foundation want to congratulate the Lily Foundation for their phenomenal success and hope that together we can work together to even more successes!