Designer Deafness

One of the most common questions an expectant parent is likely to be asked is ‘so…do you want a boy or a girl?’ to which the answer, whether true or not, is often ‘we don’t care as long as it has ten fingers and ten toes’. Although this answer clearly means that all they wish is for the baby to be born healthy, it seems strange to me to emphasize fingers and toes. To be honest I would rather my child be born with a head and 9 toes than enter into this world nothing more than a collection of beautifully formed digits.

Nevertheless, the wish for ‘perfect’ children is something that we all assume to be universal amongst parents. However, there are those who do not hold this same desire, who wish for their children to be born without the ability to hear, something many of us would see as a disability. It is hard to understand why anyone would want to deprive their children of this ‘vital’ sense, but many within the deaf community believe this desire to be an act of love as, like most parents, they too want only the best for their child.

The reasoning behind deaf parents wanting a deaf child is complicated, but usually boils down to the welfare of the child in question. A deaf child in a deaf family would, arguably, be able to thrive more easily than a hearing child born into the same environment. Having recently spent some time in the deaf community, I came across a deaf couple with a three-year-old hearing child. The child has stopped speaking entirely and communicates only through the use of sign language. If the child is not persuaded to start speaking again soon, the harder it will become for them to acquire spoken language and, though hearing, will struggle to find a place in both the deaf and hearing communities. I also met a deaf mother of three hearing children who wished her children were deaf so that she could communicate with them on the same level as most mothers and daughters.

The use of IVF and PGD (Preimplantation Genetic Diagnosis) mean that these desires could easily become a possibility. By fertilising human eggs in-vitro and then screening the embryos for genetic deafness we are able to distinguish hearing from deaf embryos. As the law stands patients are only allowed to select the hearing embryos for implantation and the deaf embryos must be discarded. Admittedly, changing the law would open up a can of worms about deliberately bringing what society would call ‘disabled’ children into the world. There is, however, an argument that being able to hear is itself a ‘disability’ within the deaf community and so is knowingly putting a hearing child in this situation just as bad?

It is an argument that cannot be resolved within the space of this blog. There are some that believe that just because we have the technology to remove disability and many genetic conditions from the population, we still should leave well alone. ‘Designing babies’ is tantamount to Nazi Germany’s eugenics. On the contrary, is the British Government endorsing a state-enforced eugenics by stating that we must immediately discard embryos, which we perceive to be ‘disabled’. Are we going one step closer to building our own perfect race?

Though PGD technology has the ability to prevent the birth of children with many debilitating conditions such as cystic fibrosis, however the question still remains should we continue to prevent the spread of genetic conditions? It is a hard question to answer though as the technology improves I think the days of designer babies being commonplace are probably not far off. The HFEA (Human Fertilisation and Embryology Authority) has recently decreed that the use of PGD technology to prevent the inheritance of genetic conditions is open to everyone. Previously there had to be a know risk of passing on unfavourable genes to the next generation before screening and embryo selection could take place. It seems like it is only a matter of time before we are able to design almost every aspect of our offspring.

 

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