bioethics, malaria, gene, editing

We Must Leave The Personal Out Of Bioethics

Bioethics is an emotionally charged topic; we must not let personal anecdotes and feelings get in the way of the potential to eradicate disease.

Recently, Dr. Joel Michael Reynolds, a Postdoctoral Researcher in bio-ethics at the Hastings Centre, published an article in TIME magazine with the emotionally-charged title “Gene Editing Might Mean My Brother Would’ve Never Existed”. I would encourage all readers to go and view the article now if they have not already done so. However, for the time-challenged, the story can be basically summed up as being that with the advent of gene editing technology being developed for better eradication of human disease and disabilities, the author’s disabled brother would never have been born, and that would have been bad.

I have nothing but sympathy for Dr. Reynolds with respect to his brother Jason, born with muscular dystrophy, cerebral palsy and intellectual disability, amongst other ailments. That said, I do find his overall argument rather fallacious, in addition to believing that the arguments he puts forth are indeed flawed. Where to start? First, let us take an over-arching view of the article and main argument itself. It essentially amounts to one large logical fallacy and cognitive bias. The argument that “technology that eradicates disease/disability would mean my loved one was never born and that is bad” is not only highly subjective (although, I have little doubt Jason is a wonderful person), but an example of the Great Beethoven fallacy that often is given by the fanatic “pro-life” anti-abortion riffraff. The argument takes the form of a conversation between two doctors:

Doctor 1: “I want your opinion regarding a prospective abortion case. The father has syphilis, the mother tuberculosis. Additionally, the first two children were born with blindness and deafness, the third was stillborn and the fourth contracted TB. What would you do?”

Doctor 2: “I would abort the pregnancy”.

Doctor 3: “Then you would have killed Beethoven”.

The problem is that this merely amounts to an argument from pity, an argument from emotion and overall a non-sequitur. We only know about an individual who made what we deem a positive contribution to individuals, society and culture after the fact. When Nobel laureate Prof. Peter Medawar first encountered this argument he stated “The reasoning behind this odious little argument is breathtakingly fallacious, for unless it is being suggested that there is some causal connection between having a tubercular mother and a syphilitic father and giving birth to a musical genius the world is no more likely to be deprived of a Beethoven by abortion than by chaste abstinence from intercourse.” Dr. Richard Dawkins likewise was a scathing critic of this argument, stating in his book The God Delusion that it is just “a rhetorical argument whose extreme stupidity is its only defence against a charge of serious dishonesty”. Now, I am not claiming that Dr. Reynolds is being “odious” or “dishonest” in his argument; I genuinely think it comes from a place of caring, of love for his brother that he has forged long emotional bonds with. However, it should be rather obvious that the Great Beethoven fallacy has an easy counter, namely replacing doctor 1’s script with all positives whereby the second doctor would be against the abortion, leading to the revelation that the child turned out to be Hitler. Now, of course this is not an argument in favour of abortion (again, “badness” or “goodness” of a person is known only after the fact), but is given to highlight the innate absurdity of the argument put forth.

The next overall problem with Dr Reynold’s article is that it makes too many indiscriminate assumptions. The assumption that overall the disabled brother is fine despite his condition is the main one. Young Jason may well be quite a happy individual, but we must remember that due to cognitive bias and the evolutionary defence of looking at past negative experience with rose-tinted glasses, we tend to downplay or ignore those experiences with the passage of time. There is nothing to say that Jason, if born in a time when we could genetically edit faulty genes in an embryo, would be any more or less happy, nor that his brother and he would have more or less of a positive relationship. We can merely speculate on this; however, we do know in this example that Jason would have been born without disability and would have improved abilities to understand and interact with the world around him, making him more equal to others with respect to health. I would argue it is unethical to not prevent disease and disabilities. Some do not like this as they say, “but they are such beautiful people”. The problem here is one is treating disabled people as a selfish tool for one’s own satisfaction, denying them equality. Furthermore, we should see the use of gene editing technology that could create a disease-free and disability-free world as an ethical obligation.

Julian Savulescu, Uehiro Professor in Practical Ethics at Oxford University, has previously said (on the topic of “designer babies”) “Surely trying to ensure that your children have the best, or a good enough, opportunity for a great life is responsible parenting…they are after all, less likely to harm themselves and others”. He likewise believes that we have a moral obligation to making healthier children, and that if we have the power to step-in against the “natural lottery”, then we must, because to do otherwise “is to consign those who come after us to the ball and chain of our squeamishness and irrationality”. I am not saying we must force parents to make these decisions when genetic editing of embryos is available, but they should be given the choice like they are already given one with pre-implantation genetic screening for those using in vitro fertilisation, or those using amniocentesis for detection (and subsequent potential abortion) of a foetus with Down’s syndrome.

Let us take this one step further (and more controversially so). What would it have meant for Jason to not have been born; i.e. that his disabilities were picked up in utero and an abortion carried out. Well, I contend this should not be a negative. Whenever an individual is brought into existence they are guaranteed pain and usually indirectly contribute to the suffering of others. Yes, read that again- I am putting forth that argument. Even if the pain is merely that of being born, twisting and turning for up to hours in the birth canal only to be exposed to bright painful lights, you have experienced pain. What if you suddenly die at this point? That means you have never experienced pleasure. If you merely did not exist, you would have an absence of both pleasure and pain. As David Benatar states in his philosophical paper The Optimism Delusion– “…indeed it is much better than existing. Although one would not have experienced the joys of life had one never come into existence, one would not then have been deprived of those goods – quite simply because one would not have existed. In other words, there would have been nobody who would have been deprived. In contrast, by coming into existence we suffer the many harms for which existence is the precondition”. For a more in-depth look at the anti-natalist arguments, I would strongly recommend Benatar’s seminal book, Better to Have Never Been . With respect to existence causing others harm, I mean that we all consume and pollute, no matter how environmentally friendly we try to be, and so by not existing (or in this case, aborting a foetus that would become a disabled child), this is a benefit. Now, I of course am not advocating that people remove themselves from living; that too would cause harm, for example, emotional harm on those who love you. It is for this reason I also advocate that we as a society should continue to develop support networks and strive for more equality for those living with disabilities (after all, they did not consent to being brought into existence).

Therefore, with the aforementioned in mind, I say to Dr. Reynolds, do not be afraid of or overly concerned with removing disease and disability from society, and do not be too emotionally moved by the thought of Jason not existing; it really wouldn’t have been that bad since you would never have formed the connections in the first place (which of course will cause you pain if he passes away before you, or your death causing him pain). In fact, some of the philosophical points given have provided me with great comfort, solace and understanding in similar situations.

Bioethics is an emotional topic, but we must remain as objective and logically nuanced as possible.

About Christopher Haggarty-Weir

Christopher is a doctoral researcher at the Walter and Eliza Hall Institute of Medical Research, the University of Melbourne and the University of Edinburgh. Christopher’s research field is in molecular parasitology/structural vaccinology, with a focus on malaria vaccine research. Christopher works part-time in biotech consultancy and green energy tech venture capitalist projects and writes candidly on topics such as bioethics, philosophy, religion, and politics.

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