The UK fertility regulator has proposed a "minor" procedure with momentous consequences which is legal nowhere else in the world
You may consider the following headline from a leading US newspaper blog last week to be rather extreme: "The British Embryo Authority and the Chamber of Eugenics". But when it is followed a week later by a news report in a British newspaper saying: "Lord Robert Winston warning over child ‘eugenics’", should we then take more notice?
The spur to these news reports was the publication of the UK fertility regulator’s report on whether to recommend mitochondrial manipulation in the UK. I have written about the proposed "treatment" for mitochondrial disorders in previous blogs (see here and in a CMF submission). Briefly, mitochondria replacement techniques, it is claimed, could enable parents to avoid passing debilitating and sometimes fatal mitochondrial diseases on to their children by using a donor’s mitochondria to create a healthy embryo (although it is a relatively rare disorder and only one child in 6,500 is affected by a serious mitochondrial disease).
This would be a form of germline genetic engineering. A 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 headlines about three-parent babies.
The UK fertility regulator, the Human Fertilisation and Embryology Authority (HFEA) has been requesting views over the past year on whether these techniques should be made available to couples at risk of having an affected child. The HFEA has just concluded that: "Our advice to Government, set out in this report, is that there is general support for permitting mitochondria replacement in the UK, so long as it is safe enough to offer in a treatment setting and is done so within a regulatory framework."
So why the negative headlines about eugenics when this research could save lives and the HFEA seems to think it is safe enough to use?
1. This technique will not save the life of any child born with mitochondrial disorders. Indeed, children will still be born with mitochondrial disorders because it is not always possible to determine which child (embryo) will be affected, how severely and at what age. This research is not about treatment of affected individuals but about trying to create unaffected individuals through genetic manipulation of the germline.
2. No other country in the world allows this technique, using germline manipulation, to take place. Over 60 countries specifically prohibit human germline engineering because of its profound social, ethical and unpredictable safety consequences for future generations. (Any mistakes and unknown consequences will transmit to subsequent offspring and become part of their genome). Scientists in countries that have not yet adopted public policies on human germline modification have nevertheless observed the prohibition.
3. Once genetic manipulation of a human life is permitted – as it almost certainly will be in the UK now – even if just for these rare mitochondrial disorders, it will be impossible to hold a line to prevent germline intervention (and engineering) being carried out for other diseases, for other reasons, and for less serious disorders. Where will we draw the line?
4. Which brings us to my fourth point, and back to the beginning of this blog, that once we start to modify human lives, and cannot realistically hold a firm line, then we face a eugenic future.
This new form of eugenics (the improvement of humans by deliberately choosing their inherited traits) uses a kinder, gentler language, clothed with words such as choice and freedom, to enable the same inherently offensive and discriminatory distinctions that used to be made between the so-called "fit" and "unfit". Today many people believe they have not just a "right" to a child but also a right to choose a particular kind of child.
Along with access to new genetic technologies, there seems to be a greater willingness on the part of scientists and prospective parents to take risks with future lives and a readiness to pick and choose other characteristics.
Yet genetically changing a human person – however little or much – turns that human into a designed product, modifiable at will, without consent. Hence Robert Winston’s concern:
"Genetic technologies could be exploited in the future to produce more intelligent, stronger and attractive offspring… current controls will not be able to keep pace with advances in reproductive technologies… a form of eugenics could lead to people wanting to modify their children to enhance 'desirable characteristics' such as intelligence and beauty."
He adds that: "I think that the HFEA is not capable of regulating either the commercial aspects of reproductive technologies or the risks that people who undergo these technologies really run."
These concerns have been repeated by others, such as: Stuart Newman, a Professor of Cell Biology: "This attempt to improve future people is not medicine but a new form of eugenics. In its willingness to risk producing damaged offspring by modifying embryos’ genomes, this 'correctionist' eugenics goes even beyond the “selectionist” version."
They have also been voiced by several high profile academics in the UK and US who warn in a letter with the headline: "Eugenics fear over gene modification" that: "we should not cross this ethical line, since it is likely to lead to a future of genetically modified 'designer' babies."
Because of these four concerns, and indeed others not mentioned here, of the 1,836 responses to the public consultation by the HFEA a majority of respondents, (including the CMF) disagreed with the introduction of mitochondria replacement techniques and a majority argued against changing the law. This article has more analysis of the public responses and the HFEA’s rather misleading conclusion in its recommendation to Government.
We have warned frequently at CMF about our concerns with a "new" eugenics (a quick search on the CMF blog page will throw up a number) but this new research does take us one significant step closer, and this time there are many other people ringing the warning bells.
Humans, at whatever stage of life or ability, should be respected and accepted as equals not selected and designed (or improved) to fit another’s whim or will.
Society’s eugenic mindset and increasing obsession with celebrity status, physical perfection and high intelligence all fuels the view that the lives of people with disabilities or genetic disorders are somehow less worth living.
I’m writing this at Easter time and although this is out of context, this verse from Luke struck me with some poignancy when read at our Good Friday service, as I had been thinking about this particular issue: "Turning to them Jesus said. ‘Daughters of Jerusalem, do not weep for me, but weep for yourselves and for your children." Sadly, this may be all we can now do for the children who will one day be born of three genetic parents.