The subject of genetic engineering, especially in the case of ensuring a future where disability no longer exists, is one that provokes controversy and discord, and understandably so; however, I would argue that this is not a strong enough argument against it. Ours is an ironically tentative culture with a confusing set of values: we comfortably parade our naked bodies to be judged and critiqued by others on national television – see Channel 4’s Embarrassing Bodies and the somewhat horrifying Naked Attraction – yet we are uncomfortable when broaching the subject of a minority which we neither relate to nor understand.
Before writing this article, I somewhat warily approached a friend I know whose sister has Down’s Syndrome. My wariness stemmed from a strange, culturally indoctrinated awareness that to ask questions about an emotive topic upon which one has little to no personal understanding is a danger zone.
Why is this the case? So often those who question the logistics of a topic shrouded in political correctness and undue embarrassment are shot down. But a hidden wound will fester, and likewise, silencing an issue which confounds us as opposed to talking openly about it does not and will not further us. In an age lauded for its progression and forward-looking stance on just about everything, I find this ironic.
The genetic engineering or screening of cells in the context of reproduction is certainly risky territory, and for this reason must be stringently monitored. However, it is also incredible that one day a world might exist in which unnecessary suffering at the hands of a range disabilities may no longer exist.
Would I love my child if she or he were to be born with Down’s Syndrome, or another handicap? Absolutely. Would I prefer that child, for his or her own sake, to lead a life free from physical or mental restraints? Of course. We would not contest a future free from cancer, mental illness, physical deformities. Why, therefore, would we wish to envision a future where children of this society are subject to the alienation of other, unaware children in the playground due to a reality of birthright which they have no capacity to control? A future in which adults who have gradually reached a stage of awareness begin to understand their limitations, to understand that their yearnings for lives like those of their peers are unrealistic? What should we tell them? That out of our own ignorance and guilt, we allowed progression in every other realm, but denied them the right to live existences free from wheelchairs, daily medication, weekly medical appointments, and trimonthly stays in ICU? Where is the justice in that? I am a firm believer that compassion ought to rule our decision making, even in the smallest ways.
But I believe that to allow future suffering merely because we feel awkward and as if we are arguing against the lives of handicapped people who already exist is wrong. In doing so, we allow the individual to be defined by their limitations. By not admitting that handicaps pose problems, above all to the individuals under their sufferance, this is what we do.
The people I know who are handicapped happen to be some of the most beautiful people I have ever had the fortune to meet. The family members of theirs I know are some of the most resilient. My friends who have handicapped siblings are intelligent and adaptable in a way which is foreign to me. The progression of genetic engineering is not a lack of recognition of this, and nor is it a bullish, thoughtless undermining of the sensitivities of the disabled and their families.
It seems to me to be necessary for the distinction to be made that disabled people exist outside of their disability; their disability, therefore, can be thought of to be an issue, but that doesn’t mean that they ought to be treated ‘abnormally’. To suggest that the workings of someone’s body or mind is not ideal for them, to suggest that it does not help them achieve the best possible quality of life, is not an objection against their personhood.
Yes, the lives of those with disabilities often enrich us. But what argument is this in favour of disallowing cell modification to ensure a future where people no longer suffer in this way? To allow suffering because it allows us to demonstrate our own moral capabilities, our understanding, our acceptance, our tolerance, is selfish.
– Amy Elliott
There are few areas of life in which the march of science has had a more positive effect than aiding couples who are suffering from infertility issues. The first ‘test-tube’ baby, Louise Brown, was born in 1978, and since then In-Vitro Fertilisation (IVF) has enabled many couples battling fertility issues to have their own biological children. No-one can deny that this is a wonderful discovery which has positively changed the lives of so many people. However, this is the beginning of a slippery slope, and the question always looms in the background of when science goes too far.
Having fertilisation occur in a petri-dish and then transferring the embryo into the mother’s womb is one thing; having fertilisation occur in a petri-dish, screening the embryo and then discarding it because of a perceived abnormality, I believe, is not.
Some foetuses are screened for inherited diseases such as cystic fibrosis, Huntingdon’s Disease and Tay-Sachs. If the test is found to be positive, and determines that the probability of the disease is high, then the option to throw that foetus away is there. No matter how you put it, the reality of what happens to this potential life is that it has any chance of life taken away from. Even when the foetus is in the mother’s womb a prenatal diagnosis of genetic disorders such as Down’s Syndrome is possible.
Despite the negative stereotypes which surround Down’s Syndrome, it has become evident that babies born with this condition can lead near completely full lives. Babies born with Down’s Syndrome can go to regular primary and secondary schools and even go on to study at university. Indeed in 2013, 20-year-old Carolina student Rion Holcombe got accepted to Clemson University. Madeline Stuart, who modelled on the catwalk at London Fashion Week was hailed as the first professional model with Down’s Syndrome. And of course, other more mundane events such as having jobs, buying houses and even getting married can also be carried out by people with Down’s Syndrome, even if it goes unreported. Why, therefore, would anyone even begin to argue that Down’s babies have a poorer quality of life?
A scary and arguably disgusting fact is that in 2014 it is estimated that 693 abortions were carried out worldwide due to the high probability of the foetus having Down’s Syndrome. That many lives were discarded purely because of concern or fear of having a disabled child. But as so many brave and strong individuals have shown, it is perfectly possible for an individual with Down’s Syndrome to lead a fulfilling life, with minimal external support. As such, the stigma of having a child with Down’s Syndrome, is gradually fading away. As people are becoming less ignorant and more educated about Down’s Syndrome, this enables a better quality of care and more opportunities to become available.
Perhaps some prospective parents decide to abort their Down’s Syndrome baby because the foetus doesn’t live up to their idea of a ‘perfect child’. But this term is in itself relative. What is a so-called ‘perfect child?’ A child without disabilities? A child with green eyes instead of brown? A child with only a certain IQ level? With such a dilemma it is difficult to know when to begin and when to end. It also is dangerously similar to the concept of ethnic cleansing- ensuring that babies with only certain traits instead of others are born, a scarily similar concept to Hitler’s wish for an “Aryan Race” during Nazi Germany.
Nevertheless, in our increasingly egotistic and self-obsessed society, the pressure to appear ‘perfect’ is greater than ever. Yet what society should be concerned with is how it treats all of its citizens, not what they look like. Arguably, there is no universal ideal as to what the perfect person looks like. A person perceived as beautiful by somebody may not be perceived so by somebody else. As such, there is no reason why somebody with Down’s Syndrome cannot come under the umbrella of being ‘perfect’.
The fact that babies with Down’s Syndrome could soon cease to exist because of the rise in abortions is a chilling fact. We are not to decide what perfection is. I believe that to dispose of a life because it does not comply with your view of what perfection should be is unfair and encourages subjectivism. A life is a life, each with as much value as the next, and should be treated as such.
– Emily Allen