… 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?
Ian Birrell has us, the taxpaying public to ease his burden and I have no quarrel with supporting stricken individuals and their families, for it is the families, parents and neglected siblings who still bear the brunt of disability. His daughter is but an infant; when she is a heavy unreasonable adult without social skills and he and his wife in declining health, I doubt he will see her existence as an unalloyed blessing. I write as the sibling of an adored but genetically damaged sister whose existence permanently damaged our family into the present, despite her early death.
ReplyDeleteI hear that a gene has been discovered which triggers a desire to obtain heavy weaponry as soon as the Change sets in.
ReplyDeleteNo-one would suggest culling these dangerous people, but wouldn't it be a good idea to sterilise their parents in advance?
jehovah jehoavah!
ReplyDeleteThis is going to be the century when we start making real genetic choices. People who react with blanket opposition are just making sure that they're going to be excluded from the debate.
ReplyDeleteIndeed. Being a pesky geneticist myself, I get to play god. Without medication I believe I am GOD. But that is another story. Of course we have been selecting our foetuses for many years now. There is a well established prenatal screening procedure in the Western world. This was set up to detect Down syndrome. By sampling the amniotic fluid during pregnancy it is possible to determine the chromosome status of the foetus. Most mothers opt for a termination when confronted with a Down's baby, and who can blame them? Technology has moved on: array CGH and next generation sequencing means we can interrogate the genome with astonishing clarity. The devil is, as always,in the detail. How we deal with this information, as a society, is something I dare not discuss. Personally, all my children are blue eyed and blond, regardless of the mater. Have I been pissing in the gene pool? Only I can judge.
ReplyDeleteI can't have any sympathy with eugenics when we're admitting thousands of 'useless eaters'from the Third World year upon year.
ReplyDeleteWhat's the scientific alternative to that?
'poor Prof Dawkins'
ReplyDeleteAah, Mr Shiny Genius went and pressed the 'self-destruct' button.
Shame about that (snigger).
yes you could eliminate people with white skins - how satisfying that would be to so many of the current pc groups.
ReplyDelete"...when she is a heavy unreasonable adult without social skills and he and his wife in declining health, I doubt he will see her existence as an unalloyed blessing."
ReplyDeleteQuite!
"This is going to be the century when we start making real genetic choices."
Like other dangerous technology, it's a pity we haven't grown to handle it responsibly...
"What's the scientific alternative to that?"
Morlocks vs Eloi?
"Aah, Mr Shiny Genius went and pressed the 'self-destruct' button."
It had to happen!