WILL DESIGNER BABIES EVER BE ACCEPTABLE? NO
A bioethics review seems to green light gene editing of embryos. This could eradicate cruel diseases and disorders but some fear Nazi-style eugenics
IMAGINE a world without genetic disease. No cystic fibrosis, no Down’s syndrome, no babies born with afflictions that will drastically affect the quality or even length of their lives. It sounds wonderful – and that is the thinking behind the Nuffield Council of Bioethics’ (NCB) review of genome editing, which has concluded there is “no absolute reason not to pursue” the genetic alteration of human embryos so as to effectively “edit out” the parts of an unborn baby’s DNA that might cause disease.
Of course the eradication of conditions such as cystic fibrosis is absolutely to be desired. Every parent alive (me included) will know the underlying worry that their baby might be born with such an affliction.
The problem is: once you have the ability to tinker with an embryo’s DNA, why stop there?
Why not also edit out further undesirable traits, or enhance others? If an expectant parent decides he or she would prefer their child to be six foot two, with blue eyes, blond hair, a strong chin and excellent muscle definition… well, why not sort that for them while you’re at it?
According to Professor Karen Yeung, chair of the group who produced the review, advances could have “profound consequences [which] affect the genetic make-up of society”.
She added: “There was an enormous range of views, including that we should not do this as to do this would be to take a step that humanity should not take.”
The report also did not draw a distinction between using the techniques to eradicate genetic disorders and for enhancing desirable physical or intellectual traits, so long as strict ethical and regulatory tests were met.
It is a sentence that should send a shiver down our spines. Once that Pandora’s box has been opened, once the technology to enhance “desirable physical or intellectual traits” is available and any lingering ethical concerns have been dismissed, why not eradicate all so-called human “flaws” altogether?
After all, it would not be the first time scientists have attempted such a thing.
As long ago as 400BC, Plato suggested the idea of selective breeding to weed out the weakest in society; and in the 19th century, inspired by Darwin’s theory of evolution, the term “eugenics” was coined, in order to describe the belief that genetics could be used to improve the human population.
The most famous proponent of eugenics was Adolf Hitler. Not only did he advocate the segregation, sterilisation and mass murder of any human he considered less than perfect – the Jews, the Roma, homosexuals, the mentally ill, those with hereditary genetic diseases – he also had horrific experiments conducted on them to try to determine what it was in their genetic make-up that made them so.
If Hitler had the technology the NCB is now advocating, he would have had no moral issue whatsoever about using it. To eradicate genetically-carried afflictions, sure, but also to get rid of anything else that didn’t fit his sick vision of what makes a perfect human, one of the Master Race, an übermensch.
The glory of humanity lies in its infinite variety. All our different shapes, sizes and colours, all our varying physical, mental and intellectual abilities and shortcomings.
We are not perfect. And that some babies are born with diseases such as cystic fibrosis is cruel and tragic. A world without such afflictions would undoubtedly be a better one.
But tinkering with the DNA of human embryos opens the door to altogether darker places. And in seeking perfection we may find it comes at the cost of the very thing that makes us what we are.
THE 1992 movie Lorenzo’s Oil brought a rare genetic condition called adrenoleukodystrophy (ALD) to the world’s attention. It means that myelin, the “insulation” around nerves, breaks down over time. Without it, nerves can’t function but the body can’t grow replacement myelin.
The disorder, which is inherited and linked to the male X chromosome, is devastating.
Lorenzo Odone, born in 1978, had the childhood cerebral form. The nerves in his brain were gradually destroyed. Diagnosed at six, having had a normal early childhood, he was bedridden and unable to communicate by the time he was seven. His parents spent years searching for a cure and eventually found erucic acid, the oil of the title, which alleviate some of the condition’s effects and allowed Lorenzo a better quality of life until he died at 30 – two decades longer than predicted.
But there is still no cure for ALD, or for a host of other inherited conditions including cystic fibrosis and Tay-Sachs disease – a cruel genetic disorder in which children develop normally for six months before becoming deaf, blind, paralysed and unable to swallow, dying aged about four.
However, research into changing the DNA of a human embryo, which has been given the green light by Britain’s most respected medical ethics body, offers the prospect of being able to “edit” embryos to eradicate such genetic diseases from the human gene pool. If conducted in an ethical way this can only be a good thing.
Globally, about 7.9 million children each year are born with a serious birth defect. The capacity to make modifications to specific areas of the genome would offer a powerful new resource in the fight against disease, and stands to save billions in care bills.
“Gene editing unlocks access to an entirely novel way to fight disease which has been unreachable until now,” says Oxford University bioethicist Daily Express Monday July 23 2018 Christopher Gyngell, adding it also holds the promise of curing some forms of Alzheimer’s.
“If we could safely and easily correct these errors at the embryonic stage it would be possible to virtually eradicate this disease burden.”
Naturally some people see meddling with our genome as dangerous but fear of the unknown should not distract us from the goal of healthy babies. After all, most aspects of human fertility science look like science fiction until they quietly become part of the scientific mainstream.
In 1964 the contraceptive pill was still illegal in eight US states, but it now enables millions of women to control their fertility.
Eighty-four years ago, endocrinologist Gregory Pincus created a test tube rabbit and was vilified as a Frankenstein, yet the birth by IVF of Louise Brown in 1978 made a hero of Nobel Prize winner Professor Robert Edwards, and enabled thousands of childless couples to start families.
New discoveries have improved our lives ever since Man found fire and it will be the same for the ability to edit away bad genes, ensuring that children like Lorenzo can enjoy healthy and productive lives.
Such medical advances could be as important to this century as vaccines were to the last.