The news is full of debates today about whether or not new research techniques should be used to create children who do not have mitochondrial disease.
New research, known as mitochondria replacement, could enable women to avoid passing debilitating and sometimes fatal mitochondrial diseases on to their children by using a donor’s mitochondria to create a healthy embryo. Any child born following mitochondria replacement would share their DNA with three people: the male ‘donor’ of the sperm, the female donor of the nuclear DNA and the female donor of the small number of mitochondrial DNA, hence the ‘3 parent’ headlines.
Mitochondria replacement research is currently permitted in the laboratory on early embryos, but the embryos cannot be used in treatment. The HFEA, is seeking views from the public on whether these techniques should be made available to couples at risk of having an affected child.
We are both concerned and sceptical about the promises that scientists at Newcastle University are making regarding their goal to help parents have children who are free from these mitochondrial diseases.
Here are three concerns for starters: the research is unnecessary, it is unethical and it is overhyped.
1. Unnecessary. There are already solutions available for the very small number of couples who find themselves in the tragic position of carrying genes for mitochondrial disease, including adoption and egg donation (although we have serious ethical reservations about the latter).
2. Unethical. It is hard to know where to start with this one. The headlines all cite the three genetic parents and clearly that is a major concern (we may not know exactly how mitochondrial DNA will be associated with a person’s identity but we do know there will be three adults with whom the baby shares a genetic connection, that will be passed down the generations) however one issue that has received no mention in the press is the need for eggs. Scientists have brushed under the carpet the fact that thousands of women’s eggs will need to be harvested to generate embryos for ethically dubious research. Egg extraction is an invasive and frequently painful procedure which involves high doses of drugs and real health risks for women donors. Where will these eggs come from? From vulnerable women needing extra income? From hard-up students? From poorer women living abroad?
3. Overhyped. The Newcastle scientists have huge financial and research-based vested interests’ and need to sell their case to funders and decision-makers. Peter Saunders says in a press release today:
‘I have a great sense of déjà vu here. There is always in this country huge media hype about supposed breakthroughs in biotechnology…But we have been here before with human reproductive cloning (the Korean debacle), so-called therapeutic cloning for embryonic stem cell research (which has thus far failed to deliver) and animal hybrids (now a farcical footnote in history) …So I’m not letting myself be carried away by the hype and spin. And I’m not holding my breath about the promises of therapies.
The Newcastle unit is a world leader in promising much and delivering little.’
To this list of three concerns could be added many more: concerns about safety (some research has found that some mitochondrial DNA still carries over and may even increase in the so-called ‘mitochondrial replacement’ babies), concerns about experimenting on embryos, about health risks to children in the long-term, about drawing boundaries, about investing in actual treatments and concerns about germline alterations (all changes, beneficial or not, as well as the donor’s mitochondrial DNA, will be passed down the generations).
What has not been broadcast in the media, nor by the scientists, is that the techniques being proposed to use for treatment in the UK would be illegal in almost every other Western country because of the profound safety and ethical concerns about altering the germline.
Alongside the vested interests, hype and profit motives driving this research, there is also a drive to prevent disabled children from being born. It is not about finding cures. We should concentrate investment and time into finding treatments and cures for disabling conditions, not into preventing those who suffer from them from being born?
We hope that many people will respond to the public consultation that the HFEA is running. It is an opportunity to not just express concerns but also (we hope) to influence policy. Allowing these techniques to be developed and used in preventing births will only serve to consolidate Britain’s position as a world leader in unethical, unnecessary and overhyped research.