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Announcement by the Wellcome Trust of funding for research into mitochondrial DNA transfer at Newcastle University, in conjunction with the government launch of a year-long public consultation on the subject.
Professor Sir John Tooke, President of the Academy of Medical Sciences, said:
“We warmly welcome news that research to understand, and address the impacts of, mitochondrial disease will continue to be undertaken by scientists in the UK, and that views of the public on this exciting area of research are to be sought.
“New techniques to prevent the hereditary transmission of mitochondrial disease could be of clinical benefit in the near future. The views of the public and patients should be taken into account, alongside scientific evidence and expert ethical opinion, when deciding whether new techniques such as these should be permitted. We appreciate the Government’s approach and look forward to hearing the outcomes of this important public dialogue.”
Robert Meadowcroft, Chief Executive of the Muscular Dystrophy Campaign, said:
“This research could end the heartbreak of parents passing on these diseases to their children – diseases that can cause devastating symptoms and even death – so it’s imperative that this research is taken forward.
“This technology has been shown to work in the lab so now we must explore it further and move it into clinical trials without delay.
“We are confident that the consultation will help the public understand the urgent need for the development of this treatment for our families. There must be a consensus to give people the chance to have healthy children.”
Sharmila Nebhrajani, chief executive of the Association of Medical Research Charities (AMRC), said:
“Right now there are no cures for mitochondrial diseases and no way of helping people avoid passing them on to their children. Research in this area is much needed and AMRC are delighted that the team in Newcastle have funding. If their research is successful it will be vital the health secretary moves quickly to ensure these techniques can be licensed and are available to patients. It is also essential that we all have confidence in the legal and ethical framework around these therapies, and we welcome the Department of Health’s public dialogue as an important step in this process.”
Dr Geoff Watts, Chair of the Nuffield Council on Bioethics inquiry on mitochondrial donation, said:
“The strong interest in mitochondrial disease research shows that it is an important time to be thinking ahead and taking stock of the ethical questions that could arise. With this in mind the Nuffield Council on Bioethics has launched an open call for evidence to seek people’s views on the ethical issues raised by techniques to prevent the transmission of inherited mitochondrial disorders.
“The techniques we are particularly concerned with involve using healthy mitochondria from a donor egg to replace the mother’s unhealthy mitochondria. If these procedures were permitted for treatment, the resulting child is expected to be free from inherited mitochondrial disorders. However, some people may be concerned about the ethical acceptability of these techniques. At this stage of our investigation we are seeking views from a wide range of people on important ethical questions such as ‘Is it acceptable to make changes in the embryo that will then be inherited by future generations?'”
(*Note to editors: 3,500 people in the UK have a form of mitochondrial myopathy, a group of mitochondrial diseases that can cause debilitating and life threatening muscle weakness. The Muscular Dystrophy Campaign has funded more than £1.2 million of research into mitochondrial myopathy over the past 15 years and has supported Prof. Turnbull’s work for over ten years, investing half a million pounds into early research to develop techniques to prevent the inheritance of these conditions.)”
Alastair Kent, Director of Genetic Alliance UK, said:
“The techniques under development at Newcastle University hold great promise for families affected by conditions caused by faults in mitochondrial DNA, and we are delighted that this work will be able to continue. We hope this next stage of research will bring us closer to being able to offer couples the option to have a child free from these devastating conditions.
“This is a complicated and sensitive area, about which the public must be well informed. We look forward to participating in the Government’s public dialogue, and to highlighting the clear value of a technique which allows couples affected by this problem to have healthy children.”
Professor Robin Lovell Badge, MRC National Institute for Medical Research, said:
“I very much welcome both announcements (from the Wellcome Trust and the HFEA). The creation of a new research centre and a public consultation will both help to ensure that innovative methods to avoid mitochondrial disease can be developed and, if deemed safe, adopted in a timely fashion. It is important that research on mitochondrial diseases, including the development of innovative methods to avoid these occurring in children, is conducted in a way that recognises the needs and concerns of patients, but also that it has the support of society at large. The new Centre will bring many of the stakeholders together, while the public consultation will be an opportunity to convey the underlying science, including the nature of these often devastating diseases, and to dispel some of the impressions gained from headlines or from those who seem to be against progress in general.
“If the pronuclear and/or spindle transfer methods are adopted clinically, and I shall await with great interest the results of the experiments requested by the HFEA’s scientific review of these methods*, any mitochondrial donor will be crucial to the outcome, namely to the birth of healthy offspring. But I personally do not think that we should get tangled up too much in a debate about whether they constitute a third parent or not. If I had eggs to give, I would be delighted that my mitochondria could help, but they would not convey any character that could be claimed as mine.”