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.
