Mitochondrial diseases: have your say

Three mitochondria surrounded by cytoplasm

Last week saw a flurry of headlines after the Human Fertilisation and Embryology Authority (HFEA) launched a public consultation – on behalf of the UK government – into new techniques to treat rare but devastating mitochondrial diseases. In a previous blog post we’ve explained how these diseases affect families, and the pioneering research carried out by Professor Doug Turnbull and his colleagues at the University of Newcastle.

Mitochondria exist inside cells and provide energy for each cell to carry out its functions – like batteries that power the cell. Diseases of the mitochondria affect this energy providing role, which can lead to a range of serious health problems.

Mitochondria contain a tiny amount of DNA that they need to carry out their functions, which is passed down from mother to child. Children inheriting faulty mitochondrial DNA are at risk of mitochondrial diseases; daughters can be healthy, but carriers of the faulty DNA, so their children will also be at risk of developing these diseases.

Professor Turnbull and his colleagues are giving patients hope, by developing techniques that replace the faulty mitochondrial DNA in the mother’s egg with that of a healthy donor. There is a good video from the HFEA explaining the techniques below.

If approved, these techniques would take place within licenced clinics and would allow some children to be born free from mitochondrial disease. These new techniques could give families affected by these diseases the chance to have healthy children, something most of us take for granted.

But why are the HFEA and the Government involved?  In order for the research to progress from the lab and into humans, there needs to be a vote in Parliament, and a new set of regulations need to be passed by politicians.

Before that happens, the Government needs to gather evidence and ask the opinion of various groups. So far, a panel of experts has looked at the science and the ethics. The techniques were reviewed as safe by a scientific committee (subject to further experiments) and a group of ethics experts said the new techniques were ethically sound.

Now the government wants to consult with the public on their opinions of the new treatment, especially from a societal and ethical standpoint. They have asked the HFEA to carry out this consultation for them. The consultation was launched last Monday and will be open until 7^th December. Anyone can respond with their feelings on the subject via the consultation website. There will also be two further consultation events in November.

The Trust is working hard to ensure there is informed debate around this consultation. We will be producing a guide on responding to the consultation, which we will post later this week. Our Director, Sir Mark Walport will be chairing an event on the subject tomorrow night run by the Progress Education Trust.

Priya Umachandran, Policy Officer, Wellcome Trust