Don’t dismiss designer babies
Designer babies. Genetically modified newborns. Made-toorder offspring who are brighter and faster and prettier than those conceived the old-fashioned way. It sounds obscene, does it not? The stuff of science fiction, a Brave New World vision that some believe is an inevitable corollary of the latest breakthrough in editing the human genome.
Having endured many years of fertility treatment, miscarriage and heartbreak, I happen to disagree; but to dismiss these fears, or sweep any further discussion of ethics under the carpet, would be hubristic, arrogant and self-defeating.
This week an astonishing medical milestone was reached when researchers at Oregon Health and Science University successfully removed defective genes from human embryos. The embryos’ cellular repair systems then replaced the missing elements with healthy versions of the genes.
The faulty gene that was targeted was MYBPC3, which causes a heart condition; it was this gene that led 23-year-old footballer Fabrice Muamba to collapse on the pitch in March 2012. He suffered cardiac arrest and was “dead” for 78 minutes before his heart spontaneously started beating again.
Thanks to this latest research, embryos that had been “fixed” would develope into babies and adults who would no longer pass the gene on. In practice, the embryos, donated for research were only allowed to develop for five days.
This technique has been lauded as having the potential to revolutionise medicine by eradicating heritable conditions such as Huntington’s disease, which affects the brain, and those 3 per cent of breast cancers that are caused by a faulty gene.
We are a long way off treating disorders that are caused by more than one gene mutation, such as cystic fibrosis, but there is every reason to assume it could happen.
The question of whether it should happen is altogether more vexing. Traits such as intelligence and athleticism are also determined by multiple gene combinations, which has given rise to perfectly legitimate concerns that in future, embryonic DNA could be altered for purely social, rather than medical, reasons.
Is there a risk? Of course there is. Human history is littered with apparent advances eventually used for nefarious purposes; nuclear fission for a start. And yes, there are nations a lot less ethically minded than Britain that might (with the stress on might) deploy this technology in an attempt to create Olympic champions or maths geniuses. But there are far less elaborate ways of achieving artificial greatness. Couples in the US can already choose from an online catalogue; eggdonoramerica.com features enough strapping Rhodes scholars and pouting prom queens to found a super-race. Except it hasn’t happened. Surely, then, the tangible benefits of gene-editing outweigh the potential disadvantages?
I know first-hand that infertility is the most terrible of burdens. It sapped my self-esteem, robbed my life of joy and prompted a self-imposed isolation.
The glimpse of a swollen belly in a crowd was like a punch in my solar plexus. Every day brought a sense of aching bereavement over something that never was; the kisses that never happened, the ghost of tiny hands gripping grown-up fingers.
I had my eldest daughter on my first IVF cycle. I felt blessed, giddy and full of hope that a second child would swiftly follow. It was seven long years of treatment before her longed-for sister was born. And yet I consider myself one of the lucky ones. I have a friend too fearful to have a baby in case his intermittently crippling Crohn’s disease gets passed on.
Another couple have taken the decision not to conceive because of her family history of depression; it hurts when people assume she was too busy with her career to care for a baby.
A third couple have two autistic children and daren’t try for a third. They wonder every day whether they ought not to go for it anyway. She admits that her biological clock is ticking so loudly that it often blocks out the voice of reason.
Of course, depression and autism can’t be prevented by gene therapy. The complex web of factors at play in Crohn’s disease have not yet been unravelled, although it does tend to cluster in families.
But my point is that childlessness – even by choice – can be such an affliction to those affected, that anything that can help desperate couples conceive healthy babies must be embraced as a good thing.
Here in Britain, our fertility industry is tightly regulated and rightly so. Yet re-implantation genetic diagnosis, where IVF embryos are assessed and only the healthy ones inserted into the womb, has been in use since 2008.
It is only available on the NHS to couples at high risk of having a baby with a genetic or chromosome disorder; the first, a girl, was born in 2009 after doctors examined embryos and discarded those carrying the breast cancer gene that had blighted three generations of her father’s family.
Since then, many more couples have had this type of screening and couples undergoing IVF privately are routinely offered genetic screening at many clinics. Small wonder; with age, the quality of both eggs and sperm declines. For a woman in her thirties, 25 per cent of her embryos will be abnormal and the figure rises to 75 per cent for a women over 40.
Would I have taken up screening had it been available to me? Probably, but as I never had enough embryos in any one cycle to have the luxury of choice, it’s rather academic.
But if I or my husband were carriers of Huntington’s disease I would have pleaded with doctors to remove the faulty gene from my embryos, my children and my family line.
Gene-editing isn’t about manipulating eye colour or boosting musicality but safeguarding health. There is a deal of difference between having a designer baby and a baby by design.