Monday, 2 February 2015

More about mitochondrial replacement therapy

Updated Tuesday morning

As we noted earlier, there appeared to be a discrepancy between what the Telegraph had reported the Bishop of Swindon as saying on Friday and the subsequent article that appeared in the Comment is free article on Saturday, listing him as joint author with Brendan McCarthy. Here is the full text of the emails sent to the Telegraph.

Church of England statement on Thursday

The Rev Dr Brendan McCarthy, the Church of England’s national adviser on medical ethics, said: “The Church of England accepts in certain circumstances that embryo research is permissible as long as it is under taken to alleviate human suffering and embryos are treated with respect. The Archbishops Council, which monitors this issue, does not feel that there has been sufficient scientific study or informed consultation into the ethics, safety and efficacy of mitochondria transfer.

“Without a clearer picture of the role mitochondria play in the transfer of hereditary characteristics, the Church does not feel it would be responsible to change the law at this time.

“The Church of England has responded to the latest Government consultation and awaits further consultation on this issue in due course.”

full text of Bishop of Swindon statement to Telegraph on Friday

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. That is not my understanding of our position and does not do justice to the response given on behalf of the Archbishops’ Council to the public consultation conducted by the HFEA. That response was largely affirming but properly raised concerns about safety, possible interactions between the mitochondria and nucleus which were not well understood, and not opening the door to modifications of the nuclear DNA.

Having been a member of the Oversight Group convened by the 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.

What is perhaps not well understood – and this may lie behind the caution expressed in your report and headline - is that changing the law to permit mitochondrial replacement will not mean it becomes immediately available in a clinic as soon as the legislation is passed. If Parliament does authorise this technique an Expert Group will continue to monitor and seek evidence around safety and efficacy; only when there is sufficient reassurance around these matters will applications for licencing be admitted.

Church of England later statement following Wellcome Trust intervention:

The Rev Dr Brendan McCarthy, the Church of England’s national adviser on medical ethics, said: “The Church of England is aware of the complex ethical issues raised over the possibility of mitochondrial replacement therapy and the extensive scientific research that has been carried out in this field over the years.

“Changing the human germline represents an ethical watershed; it is right to be cautious, requiring a comprehensive debate and degree of consensus with regard to the ethics, safety and efficacy of these techniques before any change to the current provisions are made.

“We accept in certain circumstances that embryo research is permissible as long as it is undertaken to alleviate human suffering and embryos are treated with respect. We have great sympathy for families affected by mitochondrial disease and are not opposed in principle to mitochondrial replacement.

“A wide number of questions remain to be answered before it would be wise to proceed. For example, the two proposed techniques involved in MRT are not ethically identical - little debate has been given to this. The Church has participated in the debate at every stage, making submissions to consultations run by the Nuffield Council on Bioethics, the HFEA and the Department of Health as well as participating in relevant seminars and workshops.

“Our view, however, remains that we believe that the law should not be changed until there has been further scientific study and informed debate into the ethics, safety and efficacy of mitochondrial replacement therapy.”

And yet both of them apparently signed this article.

Update

The BBC website has an interview with Brendan McCarthy which you can view here.

The Guardian has an editorial comment (unsurprisingly in favour of the legislative proposal) which includes the following:

The two churches are urging MPs to vote against treatments that will give some parents their only chance of a healthy baby. The Catholics charge a process to create a healthy, wanted embryo from two fertilised eggs – one unwanted, one unsafe – with destroying both. The Church of England, or at least the apparatchik who seems to be speaking for it, is demanding “absolute certainty” that the new procedures will work, a test that would bar any advance in medicine ever. Despite regulations, drafted after years of research and debate, that require separate scrutiny and approval for every individual seeking treatment, both churches shriek about a dash into the unknown.

Organised religion is doing such a bad job of explaining what it doesn’t like about “mitochondrial donation” that it’s tempting to conclude that there is no ethical issue at all, merely the same sort of superstition that once fuelled moral panics about heart transplants. But in calmer mood, the churches could have produced three potentially more serious objections – none of which, however, are persuasive in the end…

Posted by Simon Sarmiento on Monday, 2 February 2015 at 5:16pm GMT | TrackBack
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Categorised as: Church of England
Comments

iI share your bewilderment as to how the joint signatories could reconcile the contents of the article with their views expressed elsewhere.

Honesty, openness and transparency are vital components of ethics in the medical world; sadly, the Bishops seem not to aspire to similar standards. I can conceive of no circumstances in which my daughter would say one thing to a patient and then promptly contradict it elsewhere; it would be wholly contrary to her professional duty, and profoundly morally repugnant to her.

It may be that the Bishops are still locked in the paternalistic past whilst the medical profession engages with the real world; in that real world the Supreme Court, in its recent judgement on the Mental Capacity Act 2005, has made it plain "that human rights are for everyone, including the most disabled members of our community, and that those rights include the same right to liberty as has everyone else."

http://www.bailii.org/uk/cases/UKSC/2014/19.html

The difficulty seems to be that the Church just can't get its head around the fact that human rights are for everyone, and not just the ones the Church approves of...


Posted by: Stevie Gamble on Tuesday, 3 February 2015 at 12:19am GMT

The elephant in the room.

I suspect part of the opposition is based on fears that sometime in the future there will be full-blown three-parent embryos, where perhaps half the DNA is from one woman, and one-quarter from each of two men, or likewise half from one man, and one-quarter from each of two women.

And you know where this takes us. The GAFCON primates, reading the papers in (say) Kigali, Sydney or Lagos, will be anticipating that three parent embryos are just a ruse, somewhere down the line, for gay couples to have children carrying the DNA of both partners, as well as that of a donor.

The C of E leadership has long taken an 'anything for a quiet life' approach to GAFCON, and may feel that they need to be seen to oppose this. They will do so just as they opposed gay marriage - they know that it will pass in due course, they just have to show GAFCON that they went down with all guns blazing.

Posted by: Sam Roberts on Tuesday, 3 February 2015 at 9:15am GMT

I am not sure who The Rev Dr Brendan McCarthy reports to in the NCIs but if I were him I would prepare for a difficult conversation. The Bishop of Swindon was placed in an impossible position on the Today programme this morning and it is clear that the CofE engagement with this debate over recent years has been wholly inadequate. Once again the Church is found to have been left behind on an important national issue. It better get its act together during the next part of this far reaching development. Leave efficacy and safety to the experts. How about some serious engagement with the ethics for a change?

Posted by: Anthony Archer on Tuesday, 3 February 2015 at 5:32pm GMT

Well, now that it has been passed with a massive majority on a free vote in the House of Commons it will be interesting to see whether the Bishops will try to throw it out in the House of Lords...

Posted by: Stevie Gamble on Tuesday, 3 February 2015 at 9:50pm GMT

The bishop on the Today programme did not fare well, against Lisa Jardine.

He tried to back track on the original crass statement, by saying 'all the Church wants is more thought and care'.

Very patronising.

As Jardine said, "Where have you been all these years ? Werent you listening ?"

Posted by: Laurie on Tuesday, 3 February 2015 at 11:03pm GMT

Anthony Archer

Doctors regard efficacy and safety as vital components of the ethical analysis they undertake in considering whether a treatment is in the best interests of their patient, but you have omitted one of equal importance: the question of 'should we?'

I'm sure you did not mean to deliberately contend that doctors don't ask 'should we' but your comment unfortunately suggests otherwise...

Posted by: Stevie Gamble on Wednesday, 4 February 2015 at 1:06am GMT

This is a shocking attitude: 'role mitochondria play in the transfer of hereditary characteristics'.

Mitochondria are just little engines and who cares anyway if a bit of characteristic of the 3rd human comes through.

Should step-parents abandon step-children of the previous coupling because they have DNA of a person not in the current union.

I shall be ashamed to go though the church door now.

I note that the C of E spokesperson in the Commons has been a lifelong politician and merely replicates the Churches words like a parrot.

Posted by: Graham Cox on Wednesday, 4 February 2015 at 10:38am GMT

"The Bishop on the Today programme did not fare well against Lisa Jardine."
How true! His performance was embarrassing. I'd like to know how he got into this position.

Posted by: Flora Alexander on Wednesday, 4 February 2015 at 12:45pm GMT

Thanks to Stevie Gamble. I was not suggesting that efficacy, safety and ethics are in any sense mutually exclusive. 'Should we?' is the bottom line question. However, the evidence is that efficacy and safety have been exhaustively studied based on current knowledge. The church seems not to have contributed further (at least publically) to the debate since its submission in ? 2012. It seems to have been wrong footed on the Government's timing and is now trying to back track. How idiotic to have a bishop as a key member of the body studying this (good) and then make an announcement without apparently first consulting him (bad). How embarrassing for the Bishop of Swindon to have had to say 'I was not aware this was the view of the Church of England.' HFEC have been highly professional and convincing. How different from the Church of England. Time to review the communications machinery and call all relevant people to account.

Posted by: Anthony Archer on Wednesday, 4 February 2015 at 10:41pm GMT
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