09 February 2015
ByAppeared 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.