Not all of my Tuesday evenings are as stimulating as last nights was. The Progress Educational Trust’s debate entitled Freeing us from our Cells: Avoiding Mitochondrial Disease proved a cracker, with mostly excellent short presentations from a star studded cast of speakers, led by two very moving accounts from mothers of children who had died of mitochondrial disease, and a wide range of fascinating questions and comments from the audience. My position when I entered the lecture theatre was one of supporting mitochondrial replacement and that had not changed by the end, but I was challenged in my assumptions over the course of the two hours and came away more thoughtful and much better informed.
The issue of identity for any child conceived as a result of this form of genetic manipulation kicked off the questions from the floor and was returned to in one form or another throughout the evening. I liked the approach of Jackie Leach Scully, Professor of Social Ethics and Bioethics at Newcastle, who admitted that the genetic identity of a child conceived this way would undoubtedly be different from one where mutated mitochondrial DNA were present. One would be well and the other sick and with a restricted life span. However, she challenged the idea that a person’s sense of self would necessarily be changed as a result. I felt that an unspoken corollary to her answer probably was…unless they chose for it to be that way, but maybe that was just my projection. She felt that it would only be confusing for the child if the story they were told was alarming in some way. What would be needed was a narrative that could be shared with a child from an early age and extended as they grow older…just like in DC Network’s story books for donor conceived children.
I do recommend the Nuffield Council on Bio-Ethics June 2012 report on ‘Novel techniques for the prevention of mitochondrial DNA disorders’ for its setting out of four different notions of identity. Very helpful. I wish I had read this before attending this debate. http://www.nuffieldbioethics.org/sites/default/files/Novel_techniques_for_the_prevention_of_mitochondrial_DNA_disorders_compressed.pdf
Sadly Martin Richards from Cambridge once again chose to peddle the myth that as most parents don’t tell their children about donor conception it was unlikely that they would tell about mitochondrial replacement. A sharp interjection from me challenged this view.
The issue of the language we use to talk about the meaning of assisted reproductive technologies and advances in science was raised by John Wyatt, Emeritus Professor of Ethics and Neonatal Paediatrics at University College London. These struggles with language are very familiar in the donor conception world where even the word ‘donor’ is controversial to some. Professor Wyatt gave the description used by the Wellcome Trust of mitochondrial replacement as ‘healing broken batteries’ as an example of benign terminology being used to describe something that for some people is beyond their own ethical line in the sand. He seemed to be arguing that much could be disguised in this way. And this also seemed to be the theme of another contributor from the auditorium who thought that the ‘slippery slope’ argument against mitochondrial replacement could be hiding an agenda of deeper philosophical (or faith based?) objections.
Probably the major challenge to my own thinking came with the realisation, from a point raised from the floor, that actually egg donation could be seen as the obvious way for a woman to avoid having (another) child with mitochondrial disease. As I established only at the end of the debate, the only way of knowing which women have mutated mitochondrial DNA that could cause disease is when they give birth to an affected child. Thus, children with mitochondrial disease are going to continue to be born. But a woman with one affected child could use the tried and tested technique of egg donation, instead of the untried route of mitochondrial replacement, to be sure of having another child who would be unaffected. That the untried route would be preferred over the tried and tested one is testament to the power of the wish for a child who has the nuclear DNA of both parents. The two mothers on the panel confirmed this.
I tried out for a minute feeling huffy about this. Did it mean that donor conceived children are somehow less valued than fully genetically related children? However, I soon recognised that these feelings are of course true for all heterosexual couple parents of donor conceived children. We all would have preferred to be able to have the children of a much loved spouse or partner, but because of irreversible infertility we have had to first go through the grief of not being able to fulfil this wish and then make a second choice if we wished to become parents. In my own case and that of countless others, we now cannot imagine having different children or loving them less than those who would have carried our or our partner’s nuclear DNA. Second choice is definitely not second best.
The women who have given birth to children with mitochondrial disease have been through huge sadness and grief. Part of their DNA is mutated but they are fertile and I believe they should have the chance to have their nuclear DNA passed on with the help of mitochondrial replacement therapy.
At the end of the debate I was left feeling very clear that within the bounds of safety and with good regulation, this therapy should become available to the small number of affected families who would need it and raised my hand, with the majority of those present, to signify this assent. I am also clear that any child conceived following mitochondrial replacement therapy should be told of this fact and that narratives should be developed to begin to communicate the fact as early as possible…as with donor conceived children. What I still feel unsure about is the status of the mitochondrial donor. How important is it that she is identifiable to the child, as with gamete donors in the UK. Maybe only donor conceived adults can really answer this question…and no doubt they will have a range of perspectives.
I urge everyone with an interest in this area to read the report by the Nuffield Council on BioEthics and to respond to the HFEA’s current consultation on mitochondrial replacement http://mitochondria.hfea.gov.uk/mitochondria/
It’s fascinating and important stuff.