HFEA launches public consultation on mitochondrial disease

Posted on September 17, 2012 by

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Today sees the launch of the HFEA’s public consultation on the ethics of two novel IVF-related ways of preventing mitochondrial disease. The HFEA is seeking views from the public via an online consultation and two face to face meetings before they report to the health secretary in early 2013.

This is an issue we’ve covered before several times on this blog.

Last year the HFEA was asked to review the scientific effectiveness of these techniques. That review panel decided that the two methods might be useful in preventing mitochondrial disease, but asked for further experiments to assess their safety before they could be licensed for use in patients.

And then earlier this year, the Nuffield Council on Bioethics tackled the ethical framework and concluded that if the procedure were proven to be scientifically safe then it would be ethical to offer these therapies to patients provided they had the appropriate information and support.

So that’s lots of reports and lots of thinking on this issue.

While the further experiments are being undertaken by Professor Doug Turnbull and colleagues at the Wellcome Trust Centre for Mitochondrial Research at Newcastle University, it is now it’s the turn of the public to contribute to the debate.

The HFEA has set up a public consultation to assess public understanding of and attitudes to these sorts of techniques.

There is some controversy. There are two techniques under review, maternal spindle transfer and pronuclear transfer. Both involve:

  •  the transfer of a tiny amount of mitochondrial DNA from a donor to a recipient – that’s where those three parent baby headlines have come from;
  • and both techniques result in “germ line modification” which means that the changes to the new embryo created will be transmitted to future generations. And that’s controversial too – such germ line modifications have never been permitted in law before.

The public consultation is designed to explore the attitudes of the public to these new developments, what our views are when we first hear about mitochondrial replacement, and how they change after we have heard from scientists and ethicists (those in favour and against the technology) and then, crucially, from families living with the conditions that mitochondrial replacement could prevent.

The consultation will also try to assess if the public feels differently about the two different methods. Whilst both involve the creation of an embryo with the DNA of mother, father and that tiny amount of DNA from the mitochondrial donor, in maternal spindle transfer a donor egg is used to create the healthy embryo and the egg is then destroyed. In pronuclear transfer a donated embryo is used to create the healthy embryo and that donor embryo is then destroyed. Embryos have traditionally received special protection in law because of their special status and so the public may have different feelings about the two ways proposed.

At the AMRC we have responded on mitochondrial techniques before, most recently jointly with our member Muscular Dystrophy Campaign (read it here). In those responses we have been supportive of the licensing of these potential treatments and we have called upon the Secretary of State to involve patients and families the decisions about whether to allow these procedures bearing in mind the devastating nature of these diseases and the lack of any current cures. This public consultation offers exactly that opportunity. We will again reiterate our support for these techniques with the appropriate information, support and safeguards for patients – and you also have a chance to respond too.

Posted in: Policy, Research