I think the last time I wrote anything on the complex issue of medical ethics was a piece in Resnews on the reconstruction of the Aktion T4 memorial in Berlin, with my reflections on the ‘science’ of eugenics and on the consequences of a concept of ‘Lebensunwertes Leben’ (life not worth living).
In the Guardian’s Comment section on 8th August guest writer Ian Burrell (former deputy editor of the Independent, worked as a speechwriter for David Cameron during the 2010 election campaign) wrote about his daughter, scientific advances such as the Genome project, societal attitudes, and a new concept of eugenics.
The piece was headlined ‘Will my disabled daughter have a place in this genetic wonderland? Until society gets to grips with prejudice we cannot start to grapple with the profound questions that medical advances raise’. The piece was well and closely argued, and should be read in full – it’s not too long. I found myself broadly in agreement with Burrell: I am myself the father of a child on the autistic spectrum with learning disabilities, and I have a degree in the Humanities, which shouldn’t make me distrustful of scientists… but does.
To give you a flavour of the article, here are its concluding paragraphs:
“This is not to quibble with any woman’s sacred right to choose, merely to highlight the casual acceptance that disabled lives are second-rate and can be discarded as too burdensome. Some people, even doctors, say such things explicitly; this is the backdrop facing people with disabilities even before birth. 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.
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. They sweep aside Stephen Hawking writing about how motor neurone disease focused his work, or studies showing people with Down’s syndrome to be far happier with their lives and looks than the average person.
One tragedy of modern society is this failure to come to terms with disability, even as numbers rise with ageing populations and other medical advances. This is the true immorality: the shameful exclusion of so many people who could contribute so much to communities. Until society grips this, we cannot start to grapple with some of the most profound questions facing our species in the genetic wonderland. Sadly, it seems our technology has again exceeded our humanity.”