Mitochondrial donation treatment

Who is mitochondrial donation treatment for

If you know there’s a high risk of you passing a serious mitochondrial disease onto your children, mitochondrial donation treatment could be an option for you.

Only people who are at a very high risk of passing a serious mitochondrial disease onto their children are eligible for treatment. If you have a less serious form of the disease, you might not qualify.

If you think you might have mitochondrial disease but you’re not sure, you should talk to your GP.

You can also get in touch with one of the UK’s three main mitochondrial disease centres.

What are mitochondria?

Mitochondria are present in almost all human cells, including eggs. They create most of a cell’s energy supply which powers every part of our body.

For any cell to function, the mitochondrial genes need to work properly. Mitochondria with gene abnormalities can cause severe medical disorders known as mitochondrial disease. 

What does mitochondrial donation treatment involve?

Two techniques for mitochondrial donation have been developed and approved by Parliament: maternal spindle transfer (MST) and pronuclear transfer (PNT).

In both techniques, eggs or embryos are created using your nuclear genetic material (the genes that make you who you are) and healthy donated mitochondria.

In MST, your nuclear genetic material is removed from your eggs and transferred into donated eggs which have had their nuclear genetic material removed. The eggs are then fertilised with sperm to create embryos.

In PNT, your eggs are fertilised with sperm in a lab to create embryos. The nuclear genetic material within each embryo is then transferred into embryos created using donated eggs and sperm from the sperm provider. Again, the nuclear genetic material will have been removed from the donated eggs.

In both MST and PNT, the resulting embryos would contain your and your partner’s (or sperm donor’s) genetic material, so they would be your biological children. Both techniques work equally well.

Where can I have the treatment?

Currently, only Newcastle Fertility Centre at Life has a licence to conduct research and treat patients using mitochondrial donation techniques.

If you are considering mitochondrial donation treatment, you should contact Newcastle Fertility Centre to enquire about whether it would be a suitable treatment option for you.

If they think you are eligible for treatment, they need to apply to us for permission to treat you. This is because we need to approve every case of mitochondrial donation treatment to make sure it’s only done in a legal and ethical way.

Does the mitochondrial donor have any rights over the child?

A woman who donates their eggs and/or embryos for use in other women’s mitochondrial donation treatment will not be the genetic parent of the resulting child.

This is because the mitochondria that they provide makes up less than 1% of the child’s genetics. For this reason, they will not have any legal rights or responsibilities over the child and they remain anonymous (ie, the child will not be able to apply for identifying information about them when they are 18).

However, from the age of 16, the child can access the following non-identifying information about the mitochondrial donor:

• the screening tests carried out on them and information on their personal and family medical history
• a personal description (if provided) and
• any additional information which they have agreed to share with the child.

Follow-up to mitochondrial donation treatment

If you do have mitochondrial donation treatment, your clinic will ask if they can check up on your child’s health and development every now and then. As this is a new technique, doctors want to understand as much as possible about how it affects children and future generations. This will ensure they get the best possible care in the future, as well as contributing to our continued understanding of mitochondrial disease.

You don’t have to agree to the follow up, but if you do you’ll be helping many people affected by mitochondrial disease, now and in the future.

Mitochondria expert reviews and consultations

In 2015, parliament made the decision to legalise mitochondrial donation for use in treatment. Here you can find the many documents that led to this decision: