By Simon Lowe
Currently, 1 in 25 children are affected by genetic disorders. 30,000 children are diagnosed each year and up to half a million children and adults are living in the UK with a genetic disorder. Some genomic researchers believe that within the next few years science will have advanced to the point in which many of the world’s congenital disorders can be eliminated and many other diseases can be treated at the cellular level. These advancements mean that we may one day arrive at the point in which congenital disorders become a thing of the past. As a society, should we seek a world without disability?
One discussion surrounding genome research ethics is the possibility for the creation of ‘designer babies’. If it becomes possible for scientists to eliminate congenital disorders we may also arrive at the point in which parents are choosing certain traits that they want in a child such as blonde hair, dark eyes, to be tall etc. One potential problem around picking and choosing different traits for your child is that it could lead to a further class divide. Children from wealthy families that already have better educational opportunities and access to health services will now also be given a genetic advantage above their peers.
It is possible that the scientific advancements that may lead us to the end of disability are also capable of creating a new age of discrimination? Genetic normality becomes the disability of the future in what could be termed a real world ‘Gattaca’. Those that cannot afford further genetic enhancement become a disabled class; a class of lower intelligence, physically weaker, less desirable through any number of naturally occurring genetic traits. This could lead to new forms of discrimination; employers are selecting their employees based on their genetic traits or health insurers refusing to pay for treatment for genetic illnesses. Discrimination could suddenly go ‘full circle’.
Of course not all disability is congenital. Disability encompasses a wide range of conditions, inherited or ‘acquired’ during a lifetime and some are far worse than others. They can lead to lives so difficult that it forces them or their loved ones to lobby for euthanasia. Professor Stephen Hawking has suffered with Motor Neurone Disease for the past 50 years. He has recently spoken of his support for people to have the choice of assisted suicide. But, like Professor Hawking, many people that live with disabilities are hugely capable, talented and inspirational. Cast your minds back to the London Paralympics in 2012 and the demonstration of sporting excellence by people with disabilities despite the odds being stacked against them. The Special Olympics also remain a further indication of what people with disabilities are able to achieve.
It is generally recognised that disabled people incur extra costs for their families as well as the state. A report by the Joseph Rowntree Foundation estimated the annual cost to bring up a severely disabled child to be three times higher than a child without a disability. This may lead to some to advocate for the means to bring about the end of disability. However, there are people with disabilities that make much more of a contribution to society than many able-bodied people. People such as Helen Keller (deaf and blind), Stevie Wonder (blind), RJ Mitte (cerebral palsy), Steven Gerrard (club foot) and Alfred Hitchcock (Asperger’s Syndrome) are some of these types of people. Many people are able to overcome disabilities, demonstrate their own unique brilliance and in doing so make both a lasting impression and a notable contribution to society.
Despite such role models disabled people are currently subjected to discrimination in the workplace, more likely to be on the receiving end of hate crime or have difficulty finding loving relationships. Overall this leads some able bodied sections of society to believe that the disabled cannot ‘live life to the full’ without the same opportunities and hence their life experiences can never be as positive.
Ask yourself, do you believe the following statement to be true or false?
“If I were paraplegic I would be less happy I am today.”
Many people believe that this would be completely true in their case. People also believe that winning the lottery is something that will make them much happier. However, a study has shown that lottery winners and paraplegics tend to be equally happy with their lives a year on from their ‘life-changing’ event. This is down to what psychologists term adaptation or the ‘hedonic treadmill’. Initially, winning the lottery will make you happy and becoming paraplegic will have a negative effect on happiness levels but over time this effect wears away until there is no significant difference between happiness levels of both groups. This demonstrates how poor we are at predicting how living with disabilities will affect our happiness. A person that can walk may feel that becoming paraplegic is something that would ruin their life. The reality is they can just be as happy as they used to be or even happier.
People’s misperceptions about what it is like to be disabled mean that many think that a move to ‘end disability now’ is something that will be beneficial for that group of people. If that were the case then why have some disabled parents chosen for their babies to be born with their disability? What parent wants their child to be unhappy? Parents would not make this decision if they did not believe that their children could lead happy and fulfilling lives as a member of a disabled group.
Clearly chronic debilitating illnesses which lead to a low quality of life and profound loss of well being should be eliminated or reduced as much as possible. However, the answer to improving the lives of many may not always lie in ‘imposing’ radical gene therapy solutions but rather allowing those with disabilities to excel by ending the discrimination that is faced by disabled people on a daily basis.