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Jeff BessenWednesday 15 May 2019 7:01 am 6park.com
At a time when new technology such as gene editing offers unprecedented control over our own biology, the latest wave of medical advances, including powerful DNA-editing technology like CRISPR/Cas9, is a source of excitement and optimism.
CRISPR works like a genetic scalpel to cut a patient’s DNA, targeting and repairing genes at risk of disease.
This method of gene editing may one day make certain diseases – including Alzheimer’s, sickle cell disease, and some forms of cancer – a thing of the past.
While traditional treatments for chronic illnesses generally address the symptoms, this offers the potential of a permanent cure by attacking the disease at the source. Once genetic mutations are removed from a patient’s cells, the cells can resume normal function for the rest of the patient’s life.
What are the ethical concerns surrounding gene editing?
Gene editing technologies are not without controversy – from ethics to whether it will become a plaything of the super-rich.
One main issue of CRISPR lies in its simplicity, which means it is easier for unauthorised persons to experiment with the technology.
Already, CRISPR has become a favorite of amateur ‘biohackers’, with one man injecting himself with a homemade cocktail in a misguided attempt to boost his biceps. Another tried (and failed) to cure himself of AIDS.
And in late 2018, headlines blared that an ambitious researcher conducted secret gene editing trials in China, making mutations in human embryos to protect against HIV and then apparently turning those embryos into twin babies.
Researchers were aghast at the shoddy science and the premature use of CRISPR in human patients.
While scientists, ethicists, and regulators have called for a ban on gene editing research in human embryos until the risks are better understood, it may be impossible to prevent willing patients and unscrupulous researchers from experimenting with gene editing in humans.
Especially because when cutting-edge therapies do receive official regulatory approval, they often carry eye-popping price tags.
How much will gene editing cost?
Spark Therapeutics plans to charge US patients $850,000 for a gene therapy that treats a rare form of genetic blindness in children.
By some estimates, that’s a bargain: analysts expected a list price as high as $1 million per patient, or a half million dollars per eyeball.
There’s little reason to expect that the next approved genetic therapy will be much cheaper.
In a time when new technology offers unprecedented control over our own biology while global one per cent-ers seem to be the only ones who can afford access, is humanity at a crossroads?
Are we headed for a future where those with the means will be able to purchase genetic superiority, leaving the rest of us behind?
This science-fiction outcome is probably less likely than you think.
What are the challenges?
First, even if the ultra-wealthy wanted to purchase a ‘genius gene,’ or one for exceptional athleticism or good looks, there is no such thing.
While some diseases are caused by a single DNA mutation and are thus good candidates for gene editing therapies, traits such as intelligence, height, strength, and longevity are associated with hundreds of genetic factors, and the influence of any one genetic difference is poorly understood.
It would be impractical to make more than a handful of DNA changes by gene editing, and thus far, big data approaches have failed to surface a short-list of mutations guaranteed to make one smarter, faster, or taller.
In this case, the complexity of our biology may stand in the way of humanity’s vainest impulses.
But what if, instead of editing one’s existing genome, you chemically synthesised one from scratch?
DNA synthesis is the process of chemically stitching together DNA components in the lab, much like assembling letters in a printing press.
As synthesis technology has increased, so have the ambitions of genome synthesis projects like the Genome Project-Write. Although the leaders have sworn off the creation of synthetic human cells, by rewriting certain sequences of DNA, they hope to make cells resistant to certain viruses. (Full disclosure: I am a volunteer in the Genome Project-Write organisation.)


Even the super wealthy are more likely to be parented by Mother Nature than Father Frankenstein (Picture: Ella Byworth for Metro.co.uk)
In principle, one could use genome synthesis technology to create replicas of Albert Einstein’s cells.
But, in practice, synthesising the genome for a single person would consume most of the annual DNA manufacturing capacity of the entire world.
And the challenges of converting synthetic DNA from the test tube into a viable fetus are mammoth and remain unsolved.
Suffice to say, even the super wealthy are more likely to be parented by Mother Nature than Dr Frankenstein.
What impact could gene editing have on your health?
Significant health risks are likely to accompany any attempt at gene editing, even using improved tools of the future.
That’s because CRISPR is prone to making unwanted and unpredictable changes to the genome.
For therapy performed in an embryo, these unwanted changes would be copied in every cell of the developing baby, including cells destined to become sperm or eggs.
This is of great concern to bioethicists, who warn that genetic typos could permanently enter the gene pool.
The risks inherent to gene therapy might be acceptable for patients with deadly or debilitating genetic diseases, but they should give pause to prospective parents of ‘designer babies’.
Imagine receiving an injection during pregnancy to give your child blue eyes or blonde hair, and inadvertently raising his or her risk of developing cancer.
Consider also the alternatives to gene therapy for promoting the quality of life for one’s newborn.
Pre-implantation screening of embryos and genetic screening during pregnancy, already widely available, are safer and more effective routes to a healthy, happy baby.
Is it likely that the rich will become genetically superior?
The thing is, the rich need not resort to science-fiction solutions to surpass their fellow man.
Already, the rich benefit from longer life expectancy due to better access to quality medical care, healthier food, and less demanding lifestyles.
Evidence suggests that rising income inequality has exacerbated the disparities in health outcomes of the rich and the poor.
The most visible manifestation of ‘wealthcare’ may be the perks offered to hospital VIPs – that is, ‘very important patients.’
In the US, hospitals and private practitioners increasingly offer concierge programs for donors with deep pockets.
For example, at the Ronald Reagan Medical Center at the University of California in Los Angeles, the holder of a gold wallet card enjoys a doctor hotline answered at all hours, no waits for appointments, and valet car service.