Policy

Treatments to avoid transmission of mitochondrial disease

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Research to understand mitochondrial disease, and to investigate in vitro fertilisation (IVF) treatments which may prevent its hereditary transmission, is currently underway in the UK. In the future, these methods may enable women with mitochondrial disease to have unaffected children.

2011

The Human Fertilisation and Embryology Authority (HFEA) reported on the safety and efficacy of the new techniques in April 2011.

Subsequently, the Academy and partner organisations wrote to Rt Hon Andrew Lansley MP, the then-Secretary of State for Health, calling for the introduction of regulations to enable the research techniques to be used in clinical treatment, if sufficient pre-clinical evidence is obtained.

2012

In January 2012, the Department of Health asked the HFEA to lead a public discussion to ask whether the new scientific procedures, which could prevent women with mitochondrial disease from passing the illness to their children, should be introduced. The Academy’s President responded to these announcements. The press release is available here.

In June 2012, the Nuffield Council on Bioethics launched their report ‘Novel techniques for the prevention of mitochondrial DNA disorders: an ethical review’.  After considering a number of ethical questions, and having heard from a wide range of contributors, the Working Group concluded that “if these novel techniques are adequately proven to be acceptably safe and effective as treatments, it would be ethical for families to use them” and that “as a research objective it is ethical to gather further information about pronuclear transfer and maternal spindle transfer in order that they can be considered for treatment use.”  The Working Group also identified a number of issues that require further consideration, and noted that continuing debate about these issues will be important.

Also in June 2012, the HFEA announced that it would be working with Sciencewise-ERC on a wide programme of engagement aimed at understanding the full range of views on emerging techniques designed to prevent mitochondrial disease.

In September 2012, the HFEA launched a public consultation entitled ‘Medical Frontiers: debating mitochondria replacement’ to help fulfil this commitment. The Academy responded to the consultation in December 2012; the response is available to view here. The HFEA will report their findings to the Department of Health in spring 2013. It is expected that Parliament will debate the approval of regulation-making powers in the HFE Act 1990 (as amended) to decide whether to enable the techniques to be offered as treatments shortly after this.

The Academy will continue to monitor developments in this area of research. For further information please contact abbi.hobbs@acmedsci.ac.uk

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• Letter to A Lansley April 2011 [53.29k]
• AMS response to HFEA consultation on mitochondria replacement [141.67k]

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