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Mitochondrial donation

I’m someone who might be interested in having mitochondrial donation treatment, what should I do next?

If you are at a significant risk of passing on a serious mitochondrial disease to your children, mitochondrial donation could be an option for you. If you know you carry such a risk, you will possibly already be in touch with one of the UK’s three main mitochondrial disease centres in London, Oxford and Newcastle.

If you are not, or if you suspect you carry such a risk but are not yet sure, the best first steps might be for you to:

  • discuss the matter with your GP, and ask for a referral to a genetics centre
  • contact one of the mitochondrial disease centres directly
  • contact a clinic with a licence to perform mitochondrial disease in treatment

If you have already established that you carry the risk of passing on mitochondrial disease, you should discuss your options with a genetic counsellor. Talk to your GP or staff at one of the mitochondrial disease centres about arranging an appointment.
You may also wish to contact the Lily Foundation, a charitable organisation run by people with experience of mitochondrial disease, who can offer a network of practical advice and support.

Once the existence of mitochondrial disease has been established and you have decided to opt for mitochondrial donation, you will need to contact a clinic that holds a licence from the HFEA to perform mitochondrial donation treatment. The clinic will assess your situation and - if it considers you meet the criteria set out in the regulations - apply to the HFEA for approval to treat you specifically, as each patient must be assessed individually.

In assessing the application, our Statutory Approvals Committee will look at:

  • your medical history for evidence of mitochondrial disease, including your family history.
  • the results of any genetic testing for mitochondrial mutations and the severity of that mutation.

Overall, the committee will try to get the best possible picture of the risk of mitochondrial disease being passed on maternally to your child. Only those patients at a significant risk of passing on a serious mitochondrial disease will be lawfully permitted to have mitochondrial donation treatment.

What are mitochondria?

Mitochondria are present in almost all human cells, including eggs. They generate the majority of a cell’s energy supply which power every part of our body. Mitochondria carry just a few genes. These genes are involved in energy production. 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).

MST and PNT are both techniques of mitochondrial donation allowing eggs or embryos to be created for patients containing their nuclear genetic material (the genes which make you who you are) and donated mitochondria.

In MST, your nuclear genetic material will be removed from your eggs and transferred into donated eggs once their nuclear genetic material has been removed.

The eggs containing your nuclear genetic material and the donor’s healthy mitochondria will be fertilised with the intended father’s (or a donor’s) sperm to create embryos.

In PNT, your eggs will be fertilised with the intended father’s (or a donor’s) sperm in a laboratory to create embryos. The nuclear genetic material within each embryo will then be transferred into embryos created using donated eggs and sperm from the sperm provider, once the nuclear genetic material has been removed.

In both MST and PNT, the resulting embryos containing your and your partner’s (or sperm donor’s) genetic material and the mitochondria donor’s healthy mitochondria will be transferred to your womb and hopefully implant and develop into a baby.

Which clinics can I approach?

Clinics can now apply for a variation to their existing licence which will permit them to offer mitochondrial donation on a case-by-case basis. It is anticipated that only a small number of clinics will provide the treatments in the initial phase. Currently, only Newcastle Fertility Centre at Life has a licence to conduct research using mitochondrial donation techniques. No clinic yet has a licence to use the techniques in treatment.

No application to use these techniques in treatment can be accepted from any clinic until the three outstanding safety and efficacy techniques set out by the expert panel convened by us have been completed to the satisfaction of both the panel and HFEA Authority.

Follow-up to mitochondrial donation treatment

If you do undergo mitochondrial donation treatment, you will be asked by your clinic to participate in a follow-up scheme, meaning that your child’s health would be monitored periodically so that his or her progression can be analysed.

Mitochondrial donation is a brand new technique, being used here in the UK for the first time anywhere in the world. As such, the more information doctors and scientists can gather about the effect of the techniques on children born and future generations, the better the system can develop in the future to ensure patients get the best possible care.

While you are under no obligation to agree to follow-up, clinics are required to discuss the matter with you, so expect it to be raised.

To find a clinic, or to discuss any of the above issues in greater depth, you can contact our public enquiries team on 020 7291 8200 or email us at enquiriesteam@hfea.gov.uk.

 

Page last updated: 30 October 2015