I’m always up for having my prejudices challenged or my mind changed about something and I think that’s what happened when I attended the HFEA’s Mitochondria Regulatory Workshop on Tuesday. Regular readers of this blog may recall that I have written before (links below) about the topic of replacement of mitochondrial DNA as a way of avoiding mitochondrial disease in second or subsequent children of families who have already had a child affected by diseased mitochondria. Progress Educational Trust (PET) held an excellent event last Autumn addressing the ethical issues involved. At the end I put my hand up as being in favour of supporting legislation to allow the techniques to be used. Tuesday’s workshop was about the practical and regulatory aspects, working towards recommendations that could be made to Parliament when they come to debate the issues.
We were organised into small discussion groups and I was lucky enough to be seated next to Professor Doug Turnbull head of the Mitochondrial Research Group in Newcastle and across the table from the razor sharp mind of Veronica English of the BMA’s Ethics Department. Juliet Tizzard, the HFEA’s increasingly confident and effective Head of Communications and Policy not only kept my table in order but also conducted the whole day with consummate skill and good humour.
The question that had been lingering in my mind since the PET event was to do with any differences there might be between donors of mitochondria only and full egg donors and the implications of this for children created. This issue was addressed in two of the sections we were asked to consider, firstly the question of giving informed consent and then with regard to access to, and provision of, donor information. Donors of mitochondrial DNA would be biologically related to any child conceived with an egg containing their mitochondria. However, as mitochondria do not carry genetically transferable material affecting the looks and potentially the personality of offspring, their contribution has an impact (only) on the vital question of the child’s health. Professor Turnbull, whilst admitting that science is ever evolving in it’s understanding of cells, was clear that almost everything that there is to be known about mitochondria has been discovered, making it unlikely that future research would link mitochondrial DNA to genetically transferred characteristics. A modest man I feel by nature, Professor Turnbull did not strike me as someone who needed his ego to be boosted by proclaiming his superior knowledge in this field. In fact he seemed rather touched and amazed that his little team working away ‘up North’ could be having such an impact on so many people.
The more I thought about donor conceived adults and the undoubted need of some of them to have as much information as possible about their donor, the more I felt that actually donors of mitochondria only really don’t fit the profile of a gamete donor. Laura Witjens, head of the National Gamete Donation Trust also floated the idea that giving the status of ‘gamete donor’ to donors of mitochondrial DNA was potentially devaluing the status of egg and sperm donors and the responsibilities they take on when donating. She might have something there.
Some of the conclusions reached were that records of mitochondrial donors should undoubtedly be kept, but that if they were designated as tissue rather than gamete donors, then the HFEA would not have to be involved and records could be held locally. Unresolved was the question of how much information a donor of mitochondrial DNA would be able to have about any children conceived with her contribution if she was a tissue donor. Also raised but not resolved was the question of whether any egg donor should have her genome sequenced in order to make sure she was not carrying mutated mitochondria. Apparently genome sequencing is currently carried out on mitochondria donors coming forward to help with research. It was agreed that children conceived by mitochondrial donation should definitely be told about their conception from an early age, but it was pointed out that it was unlikely that they would not be told because of the history in their family of mitochondrial disease.
It was a fascinating event that I would not have missed and I am only sorry that a mixture of poor note taking (too busy listening) and a failing short-term memory make this report so short.
Perhaps DCN can be involved in devising a narrative for children conceived by mitochondrial donation for the future….”and the nice lady gave mummy part of her egg so that you would be a healthy baby…”