… it was good to see the announcement last week of a £300m package of public and private investment for the 100,000 Genomes Project, a Cambridge-based research initiative to sequence genomes of NHS patients.
This is a significant step into the promised brave new world of medicine, with genetic code deciphered to discover, treat and even predict illness. It will also boost a related project focusing on children such as mine whose disorders evade conventional diagnosis.Let's hear it for real progress, eh?
Now we enter the age of genetics, which offers such hope for advancing healthcare but has also sparked a new form of eugenics, with scientists talking of eradicating disabilities at birth from the human condition. This has long been predicted; even 24 years ago Troy Duster, a prominent sociologist, warned of a back door to eugenics made up of “screens, treatments and therapies”.
Now zealots such as John Harris, bioethics professor at Manchester University, advocate what they call “enhancing evolution” by eliminating genes that cause unwanted conditions to create “better” people. Last year, he told me on television it was “morally wrong” for parents to choose a child with a disability if science offered an alternative.And who could argue with that?
Those preaching this new eugenics conflate health and disability, harm and difference. They dismiss how diversity enriches the world, reject complex issues of choice, ignore implications of inferiority.Really? Let’s remind ourselves how your daughter ‘enriches the world’, shall we?
My daughter’s condition is at the most extreme end of the spectrum, requiring 24-hour care. Yet she is happy and smiles often when the wretched seizures are at bay, giving love back to those around her and lifting spirits.Hmmm, yes.
Now, I'm not suggesting euthanasia for 'useless eaters', far from it. Nor was poor Prof Dawkins, but that didn't stop the Twitterstorm from sweeping down on him.
But to be frank, who could object to ensuring that we eradicate such awful genetic abnormalities from the gene pool before they are brought to term?