It seems ironic that while ten or so women may be helped each year to have embryos free from mitochondrial disease (yes, the numbers are that small as a Government ‘estimate’ admits), many hundreds of other women will be put at real risk of harm to help them achieve this.
There is a deafening silence from the HFEA, from Government and, above all, from scientists about the fact that new research and treatment for mitochondrial disorders (covered in more detail here) will require substantial quantities of eggs to be extracted from women (or ‘donated’) using invasive procedures. Most newspaper reports on mitochondrial research entirely omit the need for egg donation and little or no mention is ever made of possible risks to egg donors.
We only hear the voices of one group of women, the tiny group of women who may benefit from this research.
Naturally, any woman who is at risk of having a child die an early death from a fatal mitochondrial disease will – understandably – welcome this research, and its (yet to be proven) promises with open arms. And I have no doubt that many scientists will be motivated by the desire to rid society of the devastating disorders that can arise from this genetic abnormality.
However very few people have warned of the dangers to another – larger – group of women who will risk their health for this research.
Donna Dickenson is one of the few who have tried to expose how egg ‘donation’ both exploits and harms women. In a 2013 journal article Dickenson cites an example of the kind of numbers of eggs required for research and treatment. In preliminary trials the Oregon team driving much of this new mitochondrial research used 106 eggs from seven women; one woman donated 28 eggs, indicating possible ovarian hyperstimulation syndrome (OHSS) which can be dangerous or even fatal.
The two techniques used for mitochondrial diseases should be less wasteful of eggs than cloning techniques. However, ‘fewer’ still means a lot of eggs.
Every single embryo generated by the two techniques (spindle transfer and pronuclear transfer) ultimately needs at least two eggs, and probably more as the procedure is, first, unlikely to be 100% efficient and, second, at least half the embryos may be defective, if the published results are anything to go by. So even more ‘material’ may be required in order to create an embryo considered suitable for transfer to a womb.
Egg donation is neither straightforward nor harmless.
There are three stages – first using drugs to shut down the woman’s own ovaries, then stimulating them to produce multiple follicles rather than the single follicle usually produced in a cycle, and only then surgically extracting the resulting eggs. This all has significant health and ethical implications for the donor, including health risk to the donor from powerful hormonal treatments, injections, invasive surgery, and yet it is not for her own benefit.
The team in the UK driving this new research, the Newcastle Fertility Centre, have not recently published information about the total number of eggs and embryos they have used in particular research projects. However, interestingly, a study at the Newcastle Fertility Centre, reported in Human Fertility, found that more than 20 eggs were collected from at least one in seven patients, 14.5% of these women were admitted to hospital and nearly all reported symptoms consistent with OHSS.
In other words, between 1999 and 2003 a total of 49 women were admitted to hospital. Life-threatening complications occurred in two women.
Worryingly, there seem to be no definitive data on the number of women hospitalised for OHSS after egg donation, as this new Parliamentary response reveals. We do know from a report out this week that just under half of 864 reported clinical incidents between 2010-2012 were due to OHSS. And: ‘Each year approximately 60 instances of severe OHSS and 150 cases of moderate OHSS are reported to the HFEA.’
So, given these risks, how do researchers get hold of enough eggs for research and ‘treatment’?
It is telling that wealthy women rarely donate their eggs. It is those who are disadvantaged, economically needy and/or infertile and vulnerable.
Nevertheless, if women have given their consent, then that is meant to be the end of the argument. But Dickenson explains that it is entirely possible for someone to be exploited even if she has consented to it. And she questions whether women should be offered the ‘choice’ of a procedure which may well inflict harm and which confers no clinical benefit.
Moreover, Dickenson says that given the lack of evidence about long-term risks of ovarian stimulation, and the absence of any co-ordinated attempt at follow-up, it is not possible for any ‘choice’ or consent to be sufficiently informed. If our government cannot give definitive data on hospitalisation rates for OHSS after egg donation, how can women give informed consent to it? Data must be collected and women are entitled to know the risks!
This potential harm to women is justified by promises that it will help ten to twenty women a year who want (note, ‘want’ not ‘need’) to have a healthy genetically related child. Yet as I explained in a previous blog post, (three-parent embryos – an orange light doesn’t mean Go!) solid evidence for safety is still lacking, the experimental techniques may cause more problems than they solve, especially for future descendants, the 10-20 women who may benefit from this risky research already have other choices, and all genetic changes will be passed down generations – which is unprecedented and illegal anywhere else in the world!
A few years ago, at the height of the human cloning debate, three prominent feminists wrote to Nature warning of the health risks to women being exploited for their eggs in a letter entitled ‘Control the Bonanza for Research Eggs’. They warned that:
‘Even after years of egg harvesting for fertility treatment, the risks to women — especially from some of the drugs and hormones used — remain undercharacterised and poorly assessed, with inadequate follow-up and data collection.’
Little has changed since that letter was written. Risking the health of large numbers of women for the sake of experimental germline research that is unpredictable, unnecessary and may not even work for ten women a year cannot be justified.
So why is all this missing from the debate on creating three parent embryos?
1. Tachibana et al. (2013) Nature Vol. 493 issue 7434, p. 627-631 found that 52% of embryos created through spindle transfer had chromosomal abnormalities – four times as many as control embryos. Craven et al. (2010) Nature Vol. 465, issue 7294: p. 82-85 reports that ‘After transfer of two pronuclei, 8.3% of abnormally fertilized embryos developed to the blastocyst stage…This is approximately 50% of the blastocyst rate for unmanipulated abnormally fertilized embryos…’