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Gene Editing Isn’t About Designer Babies, it’s about Hope for People Like Me

Discussion in 'Biomedical Engineering' started by dr.omarislam, Aug 23, 2017.

  1. dr.omarislam

    dr.omarislam Golden Member

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    What gives someone without an incurable condition such as blindness the right to stand in the way of potentially life-saving treatments?

    landmark US study by scientists at Oregon Health and Science University in Portland has for the first time successfully edited out a genetic mutation that could cause heart disease, but the fearmongering over designer babies rages on. Where would research into cures for genetic diseases be without a good old debate around the scary future of eugenics?

    For once, let’s not allow that rhetoric to take over the headlines, in the way that it did two years ago, when research into mitochondrial replacement therapy, so-called three-parent babies, made strides. This is a good and promising breakthrough, not something to fear.

    It’s easy for those unaffected by genetic diseases to dismiss scientific progress as a step towards a future in which we start selecting a criterion of eye or hair colour from a design-your-own-baby catalogue. But for people like me, affected by an incurable genetic disease that caused me to go blind, scientific advancements into gene editing and mitochondrial replacement therapy offer nothing but hope. If there is any chance of potentially saving yourself or your baby from illness, don’t tell me you wouldn’t take the opportunity.

    Don’t get me wrong, being blind has made me who I am today, and I’m grateful for that. I’ll continue fighting for equality and for the rights of disabled people, but my eyesight stops me from doing so many things that I could do otherwise. If we stop all progress into scientific research now because of the assumption that we are heading towards a society of designer babies, all that will happen is that some of us will continue to inherit often life-threatening diseases. If the only resistance to the continued research into curing genetic diseases is due to fears over a slide towards producing superhuman babies, I think people need to take a look at things from my perspective.

    I am affected by Leber’s hereditary optic neuropathy, a rare mitochondrial diseasethat affects an estimated 35,000 people worldwide. Diseases like mine are rare, and so the chances of this going beyond the ability to cure inherited diseases is unlikely to happen. Scientists are interested in curing us, not trying to change the colour of our eyes. Sometimes the opposition to techniques such as editing is so alarmist that it feels as if people are trying to keep those suffering from inherited diseases from being able to fully participate in society.


    The creation of a class of designer babies is on the other side of the spectrum to what is being discussed right now. It’s making someone who is disabled by genetics healthy – not making someone as perfect as they can be. Maybe it’s nearsighted of me to think only of the current benefits of gene editing, but if the slippery slope from cutting out faulty DNA and genetic mutations helps save lives and gives someone a better quality of life, I’m all for it.

    When people see devastating cases such as that of Charlie Gard, they’re willing to offer support. But when the situation becomes hypothetical, views change. Mitochondrial replacement therapy could remove life-threatening mutations from family lines, stopping them being passed down. Mitochondrial disease kills an estimated 150 children every year, and if advancements like this can stop children dying, there is no need for mass panic that about opening the door to bespoke babies.

    I know the dangers. I have read Aldous Huxley’s fiction and it’s not pretty. But come on, if designer babies is the only argument against trying potentially life-saving treatments, what gives someone without an incurably debilitating disease the right to debate the future of our health? If we’re going to debate anything, let’s debate the science. Let’s debate the risks. Not could-bes or scaremongering predictions. And then we can get on with saving lives.

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