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Public dialogue plays major role in parliamentary debate on new regulations to allow mitochondrial donation

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The parlliamentary debate in the House of Commons on 3 February 2015 on the new regulations to allow the clinical use of mitochondrial replacement recognised the public dialogue, and the wider public consultation, as a vital element in the evidence feeding into the HFEA's recommendations to Government, and to the Government's decision to go ahead with the regulations.

The debate generated extensive press coverage and reports of the public consultation overall, and the public dialogue (co-funded by Sciencewise) in particular.  The coverage included the following:

Hansard for 3 February includes the following statements:

Parliamentary Under-Secretary of State for Health  – Jane Ellison:

“First, I would like to bring the House up to date with the process followed since the principle of mitochondrial donation was first debated by Parliament during the passage of the Human Fertilisation and Embryology Act 2008 in 2007-08. There has been much consideration of this issue in this Parliament. Over the last five years, there has been extensive engagement and consultation with the public on this issue, including an ethical assessment by the Nuffield Council on Bioethics in 2012; a public dialogue and consultation exercise carried out by the Human Fertilisation and Embryology Authority in 2012-13; and a public consultation on draft regulations carried out by the Department of Health in 2014.”

The Labour lead in the debate (Luciana Berger) used the term public consultations to encompass a broad range of activities and noted:

“In the intervening years the science and ethics of these techniques have been extensively debated. The Nuffield Council on Bioethics and the HFEA held extensive public consultations in 2012 and identified broad public support for the use of these techniques.”

And her concluding remarks were:

“I will now conclude, as I know that many Members wish to contribute. The research has been done, the reviews carried out and the experts and the public have been consulted. Time is precious for those parents at risk of passing on mitochondrial inherited disease to their children, and I believe that we must not delay any further.”

Paul Burstow (LD)  referred to the range of reviews and noted:

“What all this work has revealed is broad public, ethical and scientific support for approving mitochondrial donation.”

Daily Mail, 3 February 2015
Covered and referred to the dialogue project, and that the HFEA are using the process and outcome as a basis for their arguments in favour of the vote: http://www.dailymail.co.uk/wires/pa/article-2935897/Winston-backs-3-DNA-IVF-technique.html.  

Guardian, 3 February 2015
Polly Toynbee also wrote about sitting in on the public dialogue process: http://www.theguardian.com/commentisfree/2015/feb/03/three-parent-babies-families-religious-mps-vote-mitochondrial-replacement

Twitter
Alan Mercer asked Ann McInnes (@LizMcInnesMP) Can I ask if HFEA public consultation @Sciencewise support sciencewise-erc.org.uk/cms/mitochondr... influenced your thinking?. The answer was "Yes, I looked a lots of different sources but the sciencewise info was particularly clear and logically presented".

The Observer, 1 February 2015
The article 'Scientists strike back at church over DNA trials', by Robin McKie (Science Editor) quotes Professor Doug Turnbull from Newcastle University saying

"There have been scientific assessments, independent safety reviews, ethics reviews and considerable public consultation. This has been an exemplary example of proper consultation and evidence-based policy" (emphasis added).

It also quotes Professor Alison Murdoch from Newcastle who quotes opponents who "say around 30% of the population is against this kind of medical intervention. But when you actually sit down with a group of people and explain what you want to do, they all say the same thing: why not?"

Google news identifies 109 related articles. It was also lead story on BBC news on Friday 30 January, and there was a feature on BBC TV Newsnight. Comments from Lord Winston have been quoted in the Telegraph 2 February 2015. The same article quotes Lisa Jardine:

‘Professor Lisa Jardine, of University College London and former Chair of Human Fertilisation and Embryology Authority said: “Between 2011 and 2014, while I was its Chair, the HFEA was responsible for a carefully designed and thorough consultation on mitochondrial replacement — one of the most extensive and impressive public consultations ever conducted.

“The suggestion this week that mitochondrial replacement therapy has not been thoroughly reviewed, and that the move to legalise the process is over-hasty, beggars belief. “

There have also been comments from Lee Rayfield, Bishop of Swindon who was on the Oversight Group for the dialogue.

In the Telegraph on Friday 30th January 2015:
‘However the Bishop of Swindon, the Rt Revd Dr Lee Rayfield, said he was backing the legislation change.

 “As a bishop who has been closely involved with consultations around the technology, ethics, permissibility and regulation of mitochondrial replacement, I was more than a little surprised to read that the Church of England regards changing the law to permit this as irresponsible," he said.
 
"Having been a member of the Oversight Group convened by the Human Fertilisation and Embryology Authority (HFEA) for an extensive public consultation around this technique it is difficult to see how a more thorough job might have been done to engage with individuals and organisations, and to explore the ethical and scientific dimensions raised."‘

In the Observer on Sunday 1st February 2015, in a joint comment article with Brendan McCarthy, notes:

‘In 2012, the government asked the Human Embryology and Fertilisation Authority (HFEA) to seek the views of the public on two techniques for mitochondrial replacement. One of us was invited on to the oversight body for this consultation, a group that brought together a cross-section of stakeholders with hugely different attitudes and convictions.
 
Through the MPA [mission and public affairs division of the Archbishops Council], the Church of England contributed to this consultation process, affirming the aim of using mitochondrial replacement (or donation as it is also termed) while also differentiating between the two methodologies being proposed; one of which (pronuclear transfer – PNT) required embryos to be created as mitochondrial donors and recipients, the other (maternal spindle transfer) did not. Although the creation of embryos may be licensed by the HFEA, the MPA pointed out that PNT carried greater ethical concerns for many Christians and, indeed, those of other faiths or none. ...

‘The MPA also has raised concerns that ethical issues relating to the differing techniques have not been sufficiently explored.'

Observer editorial on Sunday 1st February 2015 quotes comments from Jeremy Farrar, head of the Wellcome Trust:

‘Far from rushing the affair, scientists have been punctilious in their approach to mitochondrial replacement, he argued. The Human Fertilisation and Embryology Authority has carried out three safety reviews, the Nuffield Council instigated a lengthy ethics study while the Department of Health held lengthy public consultations about the procedure. On this occasion, the medical establishment seems to have behaved with exemplary fastidiousness.’

BBC article 1st February 2015 – includes a quote from Prof Turnbull –
‘Five years, three scientific reviews and a public consultation later, the UK is about to decide.

"The whole process has been suitably rigorous and the UK should be suitably proud of its ability to regulate in such a sensitive area," Prof Turnbull said.’

Independent on Thursday 29th January 2015 quotes Brendan McCarthy and Tony Baldry, in similar vein, the latter saying:

‘Sir Tony Baldry, who speaks for the Anglican Church in the House of Commons, added: “The House is going to in due course have to consider some difficult issues both about start of life and end of life. Nearly 2,500 British women with genetic mutations in their mitochondria could benefit from the technique.

The Church of England accepts that embryo research is permissible if it’s undertaken to alleviate human suffering.
 
But there are concerns that there has been insufficient scientific study or informed consultation into the ethics of mitochondria transfer, not least the role mitochondria play in the transfer of hereditary characteristics.”'

See related project page: Mitochondria Replacement