Page URL: https://www.progress.org.uk/mitochondrialdisease

Letter to the Secretary of State for Health concerning Treatments to Avoid Transmission of Mitochondrial Disease

19 April 2011

This policy document is a letter jointly written by Sarah Norcross, Director of the Progress Educational Trust (PET), and the heads of several other organisations. It was sent following the publication of the Human Fertilisation and Embryology Authority's Scientific Review of the Safety and Efficacy of Methods to Avoid Mitochondrial Disease through Assisted Conception (.pdf 446KB).

The letter was sent to Andrew Lansley (Secretary of State for Health in the UK Government's Cabinet). It was copied to Earl Frederick Howe (Parliamentary Under Secretary of State for Quality), Anne Milton MP (Parliamentary Under Secretary of State for Public Health), David Willetts MP (Minister of State for Universities and Science), Professor Sir John Beddington (Chief Scientific Adviser to the UK Government), and John Healey MP (Shadow Secretary of State for Health).


Dear Secretary of State,

Treatments to avoid transmission of mitochondrial disease

We are writing in strong support of the introduction of regulations to enable research techniques developed to prevent the hereditary transmission of mitochondrial disease to be used in clinical treatment.

We know that you have received a report from the Human Fertilisation and Embryology Authority (HFEA) providing an assessment of the safety and efficacy of techniques to avoid mitochondrial disease and that you will use this to inform your decision as to whether to proceed towards the introduction of regulations.

We note that the published report calls for additional experiments to be undertaken to further demonstrate the safety and efficacy of these techniques. We call on Government to publish a timetable for the introduction of regulations so that once sufficient pre-clinical evidence is established, clinical treatment is not unduly delayed. It is essential that if additional research is to attract funding, successful outcomes can be quickly introduced into the clinic.

Mutations in mitochondrial DNA can lead to people suffering disabling and potentially fatal symptoms including, blindness, organ failure, muscular weakness, learning disability and diabetes. Current research offers considerable promise to people who are at risk of passing serious mitochondrial disorders on to their children.

The UK's scientific leadership, financial investment and spirit of innovation have enabled work to progress to a stage where translating research into treatment looks achievable in the near future. Given the importance of such research for couples wishing to have children free of mitochondrial disease, and the speed at which research in the field is developing, researchers and patients now need assurance that such techniques will move into the clinic. We consider it essential that UK patients should benefit from treatments resulting from research conducted here.

The UK's legislative framework for human fertility and embryology research has enabled us to establish an international lead in these areas while ensuring that the highest standards of ethics, consent and patient protection are maintained. Currently, regulations are permissive in allowing research using 'permitted eggs' created from material provided by two women to address transmission of mitochondrial disease. Parliament had the foresight when revising the Human Fertilisation and Embryology Act in 2008 to anticipate advances in this field and, following significant debate, specifically included regulation making powers that would enable the use of new techniques in treatment.

We look forward to your response to this report.

Yours sincerely,

Professor Sir John Bell (President, Academy of Medical Sciences)

Lord Phil Willis (Chair, Association of Medical Research Charities)

Alastair Kent (Chief Executive, Genetic Alliance UK)

Professor Sir John Savill (Chief Executive, Medical Research Council)

Robert Meadowcroft (Chief Executive, Muscular Dystrophy Campaign)

Sarah Norcross (Director, Progress Educational Trust)

Professor Sir Mark Walport (Director, Wellcome Trust)