With medical advances promising ever more detailed pre-natal genetic screening, do we have a duty to prevent the birth of physically and/or mentally impaired individuals? ABSTRACT: Medical advances, notably PGD, offer the chance to ensure that children can be born with much lower chances of developing disabilities. It is argued in this essay that disability itself is always a hindrance, and it is not only society’s right, but its duty to prevent disability where possible to ensure social justice.
Arguments against the proposition are addressed, notably the view that working to eradicate disability indicates a lack of respect for existing individuals who are disabled. This is refuted, and it is concluded that just as established medicine works to promote health to the cost of disease, these emerging technologies are morally justified and their implementation required where resources allow.
ESSAY:
Disability has traditionally had a significant social stigma attached to it. It is usually defined in terms of some sort of impairment to the individual, whether physical or mental, which prevents them from performing one or more day-to-day activities as well as a normal human being in similar circumstances.i It is uncontroversial to suggest that society has a duty to accommodate these individuals, and for medicine to seek to improve or cure their conditions. Much more contentious however are new technologies offered by medical science, which give the chance to actively prevent the birth of babies which will be disabled.
The desired outcomes from these two approaches are the same, yet the methods are considered by many to be in entirely different moral ballparks. Who decides which disabilities are bad enough to prevent life? Are the problems faced by disabled people really just prejudice from the rest of us? Are we playing god by making value judgments on who lives and dies? In this essay we will consider these questions more deeply, and look at potential avenues of reasoning that can steer us to a conclusion beneficial to all. We do not have space to touch on screening for late onset disability (Alzheimers etc) but this is also a consideration that the reader is encouraged to persue.
We should begin by explaining what the technology makes possible. Being born with a disability is because of a faulty gene(s) in the individual’s genome. This may be as small as a single base pair mutation (as in cystic fibrosis, or CF), but can have consequences that range from a minor annoyance (myopia) to pain and distress so awful that death is considered by many as preferable to such a life (dystrophic epidermolysis bulosa, or EB being an example).
In many cases the sites on the genome which contain the mutations for disabilities have been identified. A lab can screen a fertilized embryo’s genome for the faulty genes and give probabilities on the occurrence of disability and disease in the person to be born from it. This technique is called preimplantation genetic diagnosis, or PGD.ii Some genetic tests need the embryo to develop first. For example the test result for EB is not available until up to 24 weeks into pregnancyiii iv as it involves sampling skin cells in the amniotic fluid. To prevent disability in such cases, we are aborting a foetus rather than simply not implanting an embryo. In both cases however we are avoiding creating a live, self aware individual with a disability.
We now have an idea of what the technology is capable of. The next question is the rightness or wrongness of doing what is technically possible. The first point to consider is that of justice: the ideal correct state of things and persons. It is uncontroversial to say that ideally every person has an equal opportunity to live the life that they consider to be good so long as it does not hinder others. This liberal principle forms the basis of our national institutions such as the education system and the NHS.
These bodies exist to provide universal education and healthcare – giving people an equal chance by letting everyone have the same foundations. We therefore already see it as society’s duty to promote equal opportunities where this is possible. Being born with a disability is a disadvantage by definition. Even ardent campaigners against PGD such as Dr Tom Shakespeare admit that their disability affects their lives negatively.