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Mitochondrial Donation: Is It Safe? Is It Ethical?

09 February 2015

By Dr Rachel Brown

Appeared in BioNews 789

This public debate was organised to help clarify the safety and ethical concerns raised by mitochondrial donation techniques. Held at the Houses of Parliament and organised by the Progress Educational Trust (the charity that publishes BioNews), the event was very well attended. With all the chairs taken and many more people standing, people clearly felt it was important to discuss these issues.

The event was held the night before the House of Commons voted to legislate for mitochondrial donation (reported in BioNews 789). If the regulations are passed in the House of Lords, the UK will become the first ever country to enact legislation to permit these techniques for clinical use.

Following an introduction by host Luciana Berger (Labour and Cooperative MP for Liverpool Wavertree and Shadow Minister for Public Health), the event continued with seven-minute speeches by four experts skilfully chaired by Dr Roger Highfield, director of external affairs at the Science Museum Group.

First was Frances Flinter, professor of clinical genetics at King's College London. She explained how mitochondrial donation works and who could benefit, and detailed the positive outcomes of safety and ethical reviews that have been conducted on the topic - all of which were referred to frequently throughout the evening - a comparatively dry start to what would later become a lively debate, but also necessary given that the audience contained not only medical personnel but also lawyers, journalists, MPs, Lords, and those personally affected by the topic of discussion.

Professor Flinter's speech was followed by Dr David King, founder and director of Human Genetics Alert. Dr King argued that the media and the HFEA) have misled the public. He raised his concern that mitochondrial donation will cause long-term health problems and ethical consequences. He argued passionately that legislating for mitochondrial donation would start us on the decline down a 'slippery slope' to designer babies.

He also stated that mitochondrial donation is not medically justifiable, and traditional egg donation and adoption are viable alternatives to avoid mitochondrial diseases. He felt that the genetic relationship between a parent and child afforded by mitochondrial donation is only a social benefit, and not worth the medical risks associated with the technique.

Next was Philippa Taylor, head of public policy at the Christian Medical Fellowship, who reiterated many of the ethical and safety apprehensions put forward by Dr King. She added that we do not yet fully know the effect that the donor mitochondrial DNA could have on a person. Together with the view that mitochondrial donation constitutes a germline change, Taylor felt that the techniques would amount to experimentation on humans and are unethical.

Last to speak was John Harris, professor of bioethics at the University of Manchester. Professor Harris provided an engaging and at many times funny argument for allowing mitochondrial donation based on the question 'so what'? In response to concerns that mitochondrial donation is genetic modification and requires donor embryo destruction, he described how all reproductive methods cause germline changes and that even natural reproduction is inefficient, resulting in embryo loss more often than a live birth.

Professor Harris ended by stating he wanted to put the 'uncharted peril' of mitochondrial donation into some perspective and explained that it simply allows women the choice of having what 'other women get from normal reproduction'.

The topics raised by the speakers were then discussed by the audience, aided by helpful contributions from Professor Doug Turnbull, a pioneer of mitochondrial donation, and Professor Andy Greenfield who chaired the third HFEA Scientific Review panel on mitochondrial donation.

Perhaps I was projecting, but it appeared to me that the majority of the audience was supportive of mitochondrial donation. While recognising that all new technologies are risky and require a 'leap of faith', those in support rationally focused on how exhaustive research into mitochondrial donation has been, and how safety and ethical concerns have been optimistically resolved in various reviews and public consultations.

Conversely, the opposition provided impassioned concerns over the fear of a 'slippery slope' to designer babies and concerns that mitochondrial donation is experimental and a form of genetic modification, while at least one member of the audience expressed concern that the moral status of the embryo is being ignored.

To me, many of these arguments are now unoriginal and scripted, with no specific relevance to mitochondrial donation. Although I do not think they should be dismissed, I do believe they are of limited help in the absence of more reasoned arguments.

In particular, many speakers mentioned that well-placed laws have prevented 'slippery slope' concerns from becoming a reality in the past. Professor Harris argued that embryos, and not even children, usually do not have a right to decisions about their medical care, making concerns about moral status obsolete. Many others stated that patients do not view changes to the germline as a concern but rather as the very point - a positive change that will remove devastating diseases from their family.

Importantly, we were also reminded of the personal links to mitochondrial donation. One woman detailed the sadness of watching her mother lose her independence to a mitochondrial disorder, MELAS syndrome. She spoke about her fears that she would suffer the same symptoms, and that she could not have a healthy child without mitochondrial donation. After Dr King suggested that adoption would be a viable alternative to mitochondrial donation, other members of the audience attempted to press home how real the desire to have a genetically related child can be - and how it cannot be fulfilled by egg donation or adoption, nor should it be when mitochondrial donation is considered safe.

For me, one audience member refuted any ethical concerns rather eloquently, by asking since we allow technologies to help patients with nuclear genetic diseases have a healthy family, why now turn our back on mitochondrial disease sufferers? Unoriginal and seemingly outdated concerns in opposition to mitochondrial donation are, in my view, no longer good enough answers to that question.

The Progress Educational Trust would like to thank Luciana Berger MP for hosting this debate in Parliament.

SOURCES & REFERENCES

RELATED ARTICLES FROM THE BIONEWS ARCHIVE

05 October 2015 - by Dr John B Appleby 
A workshop organised to facilitate further in-depth ethical discussions about mitochondrial donation was recently held at the Centre of Medical Law and Ethics...
07 September 2015 - by Rhys Baker 
'What is Ethics?' A seemingly innocent question asked by a 14-year-old student in my first year as a teacher. I struggled for a reply. Since then, I have been on the lookout for any resource that clarifies this question...
27 July 2015 - by Dr Dusko Ilic 
Given the complexity of the technology, costs and risks involved, two recently described mitochondrial 'gene-correction' strategies will probably remain as proof-of-concept studies and are unlikely be of practical use in clinical medicine in the foreseeable future...
27 April 2015 - by Antony Blackburn-Starza 
A gene-editing technique that may prevent mutated mitochondrial DNA from being passed down from mother to child has shown success in an animal study...
02 March 2015 - by Sandy Starr 
The House of Lords has voted by 280 to 48 to pass regulations permitting mitochondrial donation. This makes the UK the first country in the world to legislate for the use of mitochondrial donation techniques in treatment...

04 February 2015 - by Sandy Starr 
The House of Commons voted by 382 to 128 to pass regulations permitting mitochondrial donation, a majority of 254...
02 February 2015 - by Rebecca Carr 
A group of researchers, including five Nobel laureates, has urged the UK's Parliament to legislate for mitochondrial donation...
02 February 2015 - by Dr Iain Brassington 
It seems to have happened very quickly: it was only in 2012 that the public consultation process about allowing mitochondrial donation to be used on humans was underway; and now – if you'll allow the pun – the first child to have benefitted from them could be conceivable in the next few months...
12 January 2015 - by Dr Rachel Brown 
Regulations to legalise and govern the use of mitochondrial donation techniques have been placed before the UK Parliament....
08 September 2014 - by Sandy Starr 
A group of backbench MPs, led by Conservative MP Fiona Bruce, has sought to delay the laying before Parliament of regulations permitting the use of mitochondrial replacement techniques...

HAVE YOUR SAY
Mitochondria transfer (Doc - Updated on 09/02/2015)
Excellent news from Parliament. Does anyone know if mitochondrial transfer could be used to select more energetic and athletic babies?

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Published by the Progress Educational Trust

CROSSING FRONTIERS

Public Conference
London
8 December 2017

Speakers include

Professor Azim Surani

Professor Magdalena Zernicka-Goetz

Professor Robin Lovell-Badge

Sally Cheshire

Professor Guido Pennings

Katherine Littler

Professor Allan Pacey

Dr Sue Avery

Professor Richard Anderson

Dr Elizabeth Garner

Dr Andy Greenfield

Dr Anna Smajdor

Dr Henry Malter

Vivienne Parry

Dr Helen O'Neill

Dr César Palacios-González

Philippa Taylor

Fiona Fox

Sarah Norcross

Sandy Starr


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