A personal perspective by Tom Shakespeare

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.

The genetic lottery

I have a G to A transposition at point 380 of my FGFR3 gene: it causes my achondroplasia, or restricted growth. This mutation occurs around once in every 15,000 births. It's an example of the way in which the genetic lottery makes us all different. I'm not the only one with a mutation. Everyone has around 100 mutations in their personal genetic code, even if they appear at first sight to be entirely 'normal'. We are all genetically distinct. Sometimes small differences cause big problems. At other times, differences just contribute to the diversity of life.

"...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.

Genetic underclass

While disabled people have always faced discrimination, there are worrying signs of increasing discrimination on the basis of genetic differences. People who choose to continue pregnancies affected by genetic disease are facing blame for their decisions. Healthy people who have genes predisposing them to illness may not be able to get insurance cover. There are fears that, in the future, employers will use genetic tests to help pick the best person for the job. Societies and lawmakers need to stand firm against these new forms of discrimination.

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."

A designer future?

Throughout human history, people have influenced what genes their children inherit through their choice of partner. With our new DNA knowledge, we have the potential to screen pregnancies and IVF embryos to avoid the birth of disabled children. These powers of prediction and selection raise difficult dilemmas. It may be appropriate to avoid the birth of a child with a terminal disease, but is it right to use the same technology to avoid the birth of girls? Can we draw a line between this 'designer baby' approach, and allowing those who can afford it to exercise 'consumer choice' over the characteristics of their future children?

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.