The third key issue surrounding this topic is our right to judge the quality of someone else’s life, and how serious a disability needs to be before it is considered right to try and avoid its manifestation. It has been argued that it is an extremely arrogant attitude to consider ourselves worthy of deciding who may live and who may die. The Catholic Church is a particular proponent of this argument, and sees any child as a gift from god with which we must not meddle.
Aside from the fact that this argument would require us to be entirely subservient to nature (and hence close down all hospitals), it is not necessarily arrogant to feel that one life is preferable to another. Glover outlines a case from the Guardian newspaper in 1987 where parents had requested pre-natal screening for EB in order to prevent another of their children dying after 12 weeks of agonizing pain. It was not, he argues, arrogance that motivated this, rather the opinion that some lives are so painful and without reward, it is preferable to have none at all.
It is easier to make a moral case for serious cases such as EB as the quality of life is so very awful. However in order to be morally consistent with our principles of medical practice, should we not then always select for the best outcome? Where does this leave disabilities which are more moderate – they may be disabling, but not so much as to make life unbearable. The compromise policyxiii seeks to prohibit PGD on all but the most severe disabilities. I believe this to be wrong. Medicine is a profession dedicated to maximising health. It is clearly obvious that a disability is a disadvantage no matter how slight. Having a squint still allows a good quality of life, but if it could be avoided it would be of benefit.
This argument can further developed into one of the ‘slippery slope’; that is we will shift from the blurry boundary of moderate disability into selecting for positive enhancements above normality (intelligence, wit, strength). However we need to question what is wrong with such a proposition. Do we not raise children to have these traits? This is not Nazi eugenics where we are discriminating against a race, it could be a good thing to select for universally virtuous traits such as honesty.
However the complex interplay between genes in these so called enhancements is far ahead of contemporary understanding – if we switch off a gene for violence, do we also remove tendencies toward strong business acumen?xiv We should not dismiss positive eugenics outright, but currently we should only intervene in clear cases where we know the effects. CF is an example where we know there is 1 mutation on 1 gene, and if this is corrected, the only effect is that the symptoms of CF do not occur.
In conclusion, there needs to be a dissociation of disability from consideration of individual moral worth. Although a person’s disability will affect their lives to varying degrees it does not define them. It is a part of their character which is a hindrance. To do away with disability is not to consider the individual as lowlier than others, but to alter their anatomy and physiology to give them the same opportunities as healthy people. We must respect disabled people, but we must also acknowledge their condition is a bad thing to happen to a person – hence why we offer them medical treatment and devices to help them function normally.
It is my view that we have a clear duty to prevent disability wherever possible, and that this should be available to everybody from the NHS to prevent a social super-class of disease free affluent people coming into existence. At the moment there may be more pressing priorities in healthcare than universally available PGD, but this does not change the fact that it is ethically permissible and when resources allow, required.