Tom Shakespeare is Director of Outreach for the Policy, Ethics and Life Sciences Research Institute (PEALS), a project developing research and debate on the social and ethical implications of the new genetics. The partners of PEALS are the Universities of Durham and Newcastle and the International Centre for Life. He is active in the disability movement, the voluntary sector and the arts. He is a member of the National Lottery Charities Board Regional Awards Committee. With disabled colleagues, he founded the Northern Disability Arts Forum and Disability Action North East.
The Human Genome has been described as the 'autobiography of the species', because our combination of 3 billion DNA ‘letters´ is what makes us human. But humans share a lot, in DNA terms, with other species. 51% of our sequence is shared with the humble yeast. 57% is shared with cabbage. And a whopping 98% with the chimpanzee, our nearest relative. Given those similarities, it's clear that the differences between human beings are very minor indeed.
Yet the variations - about 1 in every 1300 DNA letters - are what make us individual. Except for identical twins, no one has the very same combination. Our unique genetic endowment, together with our unique life experiences, interact to produce our distinctive and unrepeatable combination of physical and behavioural characteristics.
"...we are all genetically damaged..."
When it comes to disability, genetics is actually a small part of the picture. Only about 1% of births are affected by congenital abnormality, while about 12% of the UK population are disabled. The idea of reducing the number of people with disability through ‘genetic cleansing´ is flawed. First, we are all genetically damaged and second, there will always be people disabled as a result of accident, disease or the ageing process.
People are not responsible for their genes, and they should not suffer additional social burdens because of any misfortunes which are beyond our control. If we don't take care of each other and treat each other fairly, we may risk the emergence of a 'genetic underclass'.
"There are fears that...employers will use genetic tests
to help pick the best person for the job."
If parents can effectively choose the genes of their child, then perhaps they will be increasingly blamed for making the wrong choices. IVF pioneer Bob Edwards has suggested that in future it will be a 'sin' to have a disabled baby. Bio-ethicists suggest that the choices of parents have to be balanced against the rights of a potential child. In our brave new world, your responsibility for your children begins before they do.