Call for evidence on mitochondrial donation

The Council has launched a call for evidence on the ethical issues raised by techniques to prevent the transmission of inherited mitochondrial disorders.

These techniques could be used in combination with in vitro fertilisation (IVF) and gamete donation to prevent children from being born with inherited mitochondrial disorders. At present, there are no known cures for these disorders, which can cause severe symptoms such as heart failure, liver failure and blindness, and may cause death in babies, children and young people. Approximately one in 250 live births, and at least one in 10,000 adults in the UK are affected by mitochondrial disorders.

Research is currently at an experimental stage on these techniques, which use healthy mitochondria from a donor to replace the mother’s unhealthy mitochondria at the point of reproduction. However, it is currently unlawful in the UK to offer such techniques for treatment.

The Council set up a Working Group to explore the ethical issues raised by mitochondrial donation in November 2011. The Working Group will consider the evidence it receives before publishing a final report later this year. The final report is intended to identify the ethical questions raised by these emerging technologies, and to elaborate these issues with a view to stimulating and informing further discussion, deliberation and debate.

“If these procedures were permitted for treatment, the expectation is that the resulting children would be born free from inherited mitochondrial disorders, and it would allow women to use their own eggs to have a baby” said Dr Geoff Watts, who is chairing the Council’s inquiry. “However, some people may be concerned about the ethical acceptability of these techniques, which involve making genetic changes that will be passed on to all subsequent generations if the treatment is successful. At this stage of our investigation we are seeking evidence from a wide range of people on these important issues”.

This call for evidence is open to everybody. We would particularly like to hear from affected families, potential donors, researchers, medical professionals and anyone who has an interest in this area.

The Working Group is seeking evidence on questions such as:

  • Is it acceptable to modify (rather than select) an embryo before it is implanted into the womb? In what kind of circumstances?
  • Is it acceptable to make changes in the embryo that will then be inherited by future generations?
  • What ethical distinctions can be made between techniques which seek to transfer pronuclear DNA between embryos and those that seek to transfer nuclear DNA between embryos or modify nuclear DNA in an embryo?
  • If mitochondrial donation were to be approved for medical treatment in the UK, what government or regulatory policies, and/or professional guidelines would be needed to promote ethically sound practices?

The deadline for responses isFriday 24 February (5pm).

Find out more about the Council’s call for evidence

Also announced today:

The Department of Health and the Department for Business, Innovation and SKills have asked the Human Fertilisation and Embryology Authority (HFEA) to lead a public discussion on emerging IVF techniques designed to prevent the transmission of mitochondrial disease. The public dialogue will begin later this year.

A new Wellcome Trust Centre for Mitochondrial Research at Newcastle University has been launched.

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Nuffield Council on Bioethics
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bioethics@nuffieldbioethics.org

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