Imagine this: you’re carrying a gene known to cause cancer, and your doctor tells you about a new medical technology that could prevent your baby from inheriting this gene. Would you accept his offer to genetically modify the embryo that later will grow up to become your child, if it would mean you could eliminate the chance of him or her becoming a future cancer patient? However, the fact that you’re a carrier of this gene is not the only worry you have: in fact, your life has also been heavily shaped by the constant struggle with your weight. Although not exactly life-threatening, you have always been on the heavy side – something that has not really had a positive effect on your self-esteem. But your doctor has a solution for this too: the same technique that could eliminate the ‘cancer-gene’ can also give your child the genes that will result in the slender build and fast metabolism you never had. Would you again accept the offer?
The thin line between what is ethical and what is not
It might sound as something from a sci-fi movie, but as we speak, experiments are being carried out with the modification of genes. Ever since the first tests took place around the 1970s, the practice of ‘genome editing’ has tremendously evolved. The real break-through in the field, however, dates back only a few years: the discovery of CRISPR-CAS. In short, this technique allows for the editing of strands of DNA in organisms that are not yet fully grown so that undesirable DNA sequences can be left out, and new material can be added. Possible applications include the cultivation of crops that are disease-resistant or, as was illustrated earlier, eliminating the transmission of genetic disorders in human embryos. Could CRISPR-CAS then be the answer to the problem of worldwide hunger and the high infant mortality rates? Who knows, but rather than seeing it only as a means by which scientists are going to save our planet, the advancement of this technique is also a reason for concern. Because as methods evolve, the question no longer is how far we can go with the modification of genetical material but rather how far we should want to go. Although until now, no experiment with genome editing may legally result in a pregnancy, the time has come to ask ourselves what to do when that day arrives.
The main problem with genetic modification is that the line dividing alterations that are ethically acceptable from those that are not is very blurry. You will never hear me say that I am opposed to destroying the genes that can cause horrible diseases such as cancer, muscular dystrophy and Parkinson’s. However, the question which disorders should we genetically alter, might evoke different answers from different persons. A good example to illustrate this is Down Syndrome. Numbers show that, since the so-called NIP (Non Invasive Prenatal)-test has made it possible to test for the presence of Down Syndrome in an unborn child, the majority of women who tested positive decided to have an abortion. Of course, there were also mothers who decided to keep their baby; which illustrates that a disease that some perceive as a serious problem, could be seen in a very different light by others. Another case to consider is Asperger, a form of autism for which the degree of strength differs per person. Although officially recognized as a disease, you could ask yourself how urgent the need for elimination really is. As journalist Jennifer Kahn argued in The New York Times: “People with the diagnosis Asperger don’t need fixing. They just think differently in ways that aren’t necessarily worse.”
Starting a family: the newest trend in DYI-land?
When stepping away from officially recognized disorders, the situation becomes even more ambiguous. Should we, for example, use genetic modification to alter human appearance? Why not; what harm is there in simply fixing a crooked nose here, adding a pair of tall, slim legs there and topping off by giving the little one a set of big eyes with thick, dark eyelashes? Surrendering to these types of modifications would be, as British non-profit organisation ‘The Nuffield Council on Bioethics‘ defined it, a “consumerisation of human biology”. In the end, it would leave us with what many mockingly have called a ‘designer baby’. Starting a family then would become nothing more and nothing less than a DIY-project whereby through mixing and matching you create the perfect pool of genes – almost as if you were shopping for pieces of furniture that together would create an enviably stylised interior.
Apart from the ambiguity surrounding the question which features we should genetically modify when this becomes possible, another important issue is posed by the accessibility of the technique. As is the case with any new technology that is introduced, prices are bound to be very high at the offset. In this case, that would mean that rich families will be able to create the designer baby who meets all the criteria of ‘The Perfect Child’ while less affluent families can only opt to start a family the natural way. Considering that changes that CRISPR-CAS introduces in the DNA structure are permanent, this means that all the changes you introduce in your child’s genetic structure will also be carried over by his or her children, creating a bloodline that becomes more ‘perfect’ with every new generation. Eventually, this could lead to an insurmountable divide between the rich and the poor: not only financially, but also genetically.
1-0 for team Genetic Modification
Consider the case of genetic memory enhancement. In an article for The Atlantic, philosopher Michael Sandel refers to tests in which fruit flies were genetically modified, so they became equipped with a photographic memory. Similar experiments with mice were equally successful, and now the industry is trying to apply this knowledge to make it possible to give the human brain a boost. If you know someone who suffered from the ruthless Alzheimer’s Disease, you might agree with me that such a development appears to be a good thing, right? However, as is the case with many medical treatments, this one too could in practice be applied in cases other than those mentioned in theory. “It could also have purely nonmedical uses: for example, by a lawyer cramming to memorise facts for an upcoming trial, or by a business executive eager to learn Mandarin on the eve of his departure for Shanghai,” explains Sandel. And is that something we should allow? Again, if you ask me, this would place a lot of people – that is, those who do not have the means to acquire this treatment – in a disadvantage. In the situation of the lawyer, for example, that would mean the trial would already start with a score of 1-0 for the genetically enhanced party.
Here’s the thing about short-cuts
The ideas proposed in this article might have sounded exaggerated in some cases and even ludicrous in others – yet, I believe that when considering this topic, we should take into account all possible scenarios. That means the discussion should not only be limited to the most obvious applications but should also cover any possible side-effects. Currently, it is still illegal everywhere that these experiments lead to the birth of a real person. Before this can become a real-life scenario, legislation would thus need to be carefully assessed (and altered), and of course that will also require having a debate on where to set the limits of genetic enhancement. What we shouldn’t forget, however, is that even if something is doable and considered ethical, that does not automatically mean we should also do it. If you would live on a planet roamed by billions of super-humans, just like yourself, wouldn’t that take away this indescribable thing that gives meaning to life? If you could run a marathon without experiencing even a second of getting short on breath, would easily ace all your exams without the occasional coffee fuelled all-nighter and would have ‘the perfect body’ (whatever that is): with genes that did half the work for you, there’s little room for personal growth. And is that not exactly what makes life worthwhile? The opportunity to work on becoming the best version of yourself, through a process of trial and error that never really ends?
Thinking about all of this made me recall a quote you maybe have read as well: “It’s not about the destination, it’s about the journey to get there’’. In life, too, it shouldn’t only be about who you are in the end. Equally, or perhaps even more important, is the road you have to take to get there. In some cases taking a metaphorical short-cut can be useful, but most of the times it only means you miss out on the best views and hidden spots you otherwise would’ve encountered along the way.
Image credits: Redbrick, The Zlatica Hoke Post and Pinterest
This article first appeared on the jEURnalist.com.
May-Anne Oltmans | Portfolio 