SHOULD WE USE GENETIC ENGINEERING ON EMBRYOS TO PREVENT FUTURE HUMANS FROM SUFFERING?
Unnatural. Scary. Superpowers. God. Danger. Science. Mutation. Immortality?
…these are only some of the many words to emerge on the shore of our minds when confronted with this controversial question: should we use genetic engineering on embryos to prevent future humans from suffering?
On Wednesday, August 2nd 2017, the New York Times reported a major scientific breakthrough: “Scientists for the first time have successfully edited genes in human embryos to repair a common and serious disease-causing mutation, producing apparently healthy embryos”[1]. We are, in other words, beginning to graze, from the tip of our fingers, the prospect of curing once and for all hereditary genetic diseases. In the words of Brad Plumer, “we’re talking about editing humanity”[2].
This milestone would allow us to cure 30% of all deaths caused by chronic diseases[3], and prevent the yearly deaths of 7.9 million children worldwide(3). This means that we could all potentially become that one elderly person we know of that lived healthy and happy until they died at 104 from a random stroke.
This would be done through genome editing, and specifically through the use of CRISPR and Cas9. CRISPR is a guide molecule of RNA that “allows scientists to precisely target and edit pieces of the genome”[4]. Cas9, which is guided by CRISPR, is an enzyme that “cuts the DNA at the specified point”[5], and act as “molecular scissors”[6]. This following diagram is a visual representation of this process:
The pink bean-like shape represents the Cas9 enzyme, the yellow ladder is CRISPR (an RNA molecule), and the scissors indicate the place where Cas9 cuts the DNA, indicated by a strand of yellow CRISPR. Subsequently, the procedure can either entail deleting a gene (disrupting the sequence) or inserting one (creating a new sequence)(2).
Whilst many are enchanted to use this new technique as a way to cure genetic diseases, many are concerned at the prospect of using it for enhancement purposes. Indeed, the National Academies’ Report of 2017 pointed out that “in the future, the same interventions could potentially enhance people’s natural abilities”(4). This means we could curate embryos so that they correspond to their parents’ wishes in terms of appearance, physical and mental abilities… not unlike the reality depicted in a certain 90s’ classic film called Gattaca.
Gattaca, produced in 1997, is a film about a society in which genetic engineering has become the norm. The main character, Vincent Freeman, is a man that was born outside that norm — in the biblical way, if you will. His imperfections warrant him to be discriminated against as an “Invalid”, and prevent him from chasing his dream of becoming a space traveller. However, he is willing to take any and every step possible to climb the DNA ladder, including borrowing another man’s identity. When thinking about the possible consequences genetic engineering could have on humankind, science fiction may become a valuable vision; and so, we will explore the ethical opportunities and downfalls awaiting a society built on gene editing, through the lens of this movie.
Is reducing suffering our moral duty?
With the latest discoveries in the field of genetic engineering, reality is quickly reaching what science fiction was only able to imagine. We are facing historic changes that would affect an incredible amount of lives. First, genetic engineering would overall reduce human suffering.
Indeed, it would provide “families with their best hope for having healthy children”(4), even parents susceptible from passing on a dangerous genetic disease(6). According to the New York Times, treatable conditions “might include breast and ovarian cancer linked to BRCA mutations, as well as diseases like Huntington’s, Tay-Sachs, beta thalassemia, and even sickle cell anemia, cystic fibrosis or some cases of early-onset Alzheimer’s”(1). In Gattaca, the vast majority of parents conceive children with the help of geneticists who make sure that their offspring will be genetically perfect, both physically and intellectually. The main character, Vincent, has been conceived “naturally” by his parents and did not benefit from this genetic selection. At his birth, doctors evaluated his risks of heart disease at 99%, bad sight and short life expectancy at 30.2 years.
This extract shows us our everyday reality — a reality that would be vastly improved if we were to have access to genetic engineering. Vincent’s risks of mental illness and heart failure would certainly be reduced, and his life expectancy would be greatly improved.
Not only is genetic engineering an opportunity to reduce overall suffering, it is also our ethical duty to cure potential diseases. Dr. Lovell-Badge from the Francis Crick Institute in the United Kingdom explained that there lies a duty, especially for doctors, “to explore what the technology can do in a safe, reliable manner to help people”[7]. If we are faced with the choice of saving the life of a child that may die of a genetic disease, we bear the responsibility of their death if we choose not to apply genetic engineering. It is very simple: “if science can be used to eliminate human suffering, then let’s get on with it”[8].
This first extract of Gattaca does show that Vincent’s life is directly impacted by his mother’s choice not to have let her geneticist cure him: “I’ll never understand what possessed my mother to put her faith in God’s hands rather than those of her local geneticist”. In this case, Vincent’s mother holds the responsibility for not giving him the opportunity to be healthy. And so will we all, if we do not go forward with this kind of technique that could save millions of lives.
However, this kind of Gattaca-like system has been said to raise fears of biological harm for future generations. Widespread access to gene editing techniques could lead to a homogenization of society’s genetic pool(3). To put it simply, certain “fashionable genes” would be favored by parents, and this would reduce overall diversity within the genetic pool. Since this diversity is valuable for our species as a whole, we can wonder if it is a good idea to give the responsibility of the gene’s choice to the parents. The genetic traits that are fashionable today might very well become damaging tomorrow. If every parent picks the same immunity genes for their children, it may make them collectively more vulnerable to pathogens, causing widespread epidemics(3). Therefore, genetic editing may be a danger for our species.
A slippery slope: where is the line between disease-prevention and human enhancement?
This issue of “fashionable genes” raises another important question regarding the use of genetic selection, and its purposes. We have seen that practicing genetic modification to prevent diseases and reduce human suffering in general can be morally acceptable. What about genetic modification for enhancement? The boundary between genetic modification to prevent diseases and genetic modification for enhancement is not easy to set. This issue is raised in this second extract from Gattaca.
This scene shows the range of possibilities that genetic manipulation gives parents when conceiving their children. Here, the geneticist tells Vincent’s parents that they have the choice between “two healthy boys and two very healthy girls” who have “naturally [no] critical predisposition to any major inheritable disease”. However, the physician takes a step further and explains that he has eradicated any potentially prejudicial conditions, so as to give the baby “the best possible start”. This way, genetic modification is also as a tool for enhancement: this goes from physiological dispositions such as myopia or premature baldness to psychological ones such as predisposition to violence. This raises the question of the frontier that lies between editing for disease prevention, and editing for enhancement purposes.
There are fears of a “slippery slope” situation, much like what happened in the surgical field. Indeed, as Dr. King points out, “Scientists who started their careers hoping to treat sick people and prevent suffering are now earning millions of dollars creating drugs to “enhance cognitive performance” or performing cosmetic surgery”[9]. We might have the best intentions by making these techniques available, but there is no way of knowing that it will not be used for purposes that go beyond the medical field in the future.
The genetic gap: a threat to equality?
Moreover, gene editing raises concerns on equality among society’s members. Kazuo Ishiguro, this year’s Nobel prize winner for literature, formulated this particular concern: “In liberal democracies, we have this idea that human beings are basically equal in some very fundamental way. When you get to the point where you can say that a person is actually intellectually or physically superior to another person (…) that has enormous implications for very basic values that we have”[10]. By essentially birthing super-humans, we will be creating a new kind of humanity that will surpass ours in every way, destroying the very principle of equality amongst people that we enjoy today in liberal democracies. In Gattaca, this kind of discrimination is called “Genoism”: people with “cleaner profiles” are given the opportunity to have the better jobs, whilst the rest of the “Invalids” enjoy low-level income employment.
In addition to this, genetic editing will probably worsen racism and discrimination against disabled people. Since we know that people with fairer skin enjoy better employment opportunities and greater privilege in society, why would we not set our children to be whiter[11]?
Genetic engineering opens the door to the erasure of entire groups of people who are discriminated against, as a way for parents to secure the best future possible for their children. People with disabilities or deformities will be ostracized, and seen as failing to reach the new standard for humanity. In Ms. Cussins’ words: “As long as we continue to discriminate on the basis of sex, race and ability, technology that aims to “perfect” humanity will function as a mechanism of social and reproductive control”[12].
In Gattaca, the character of Eugene, Vincent’s disabled but “valid” shadow who allows him to use his genetic material as a cover, is visibly unable to have a job and has been rejected from society. Irene, Vincent’s partner, is also restricted in her career path because of a heart condition, which geneticists failed to identify and cure.
One might say that gene editing is in fact the opportunity to end all discriminations: by homogenizing the populations, the victims of discrimination will simply no longer exist. By erasing all those who do not belong to the norm, you erase discrimination based on “abnormality”.
This argument is easily refutable: as illnesses disappear and physical and mental capacities improve, “anomalies” are left behind — those whose gene editing did not succeed, like Irene, or those who were not edited at all, like Vincent. In this extract, Vincent details the name-calling and shaming that people who are not genetically edited and want to fit in society suffer from.
Performance becomes the overwhelming burden of humanity, and as homogeneity emerges, a difference to the norm only leads to increasing intolerance. By erasing diversity we do not solve the issue of intolerance, we simply mask it temporarily.
Genetic selection would thus mark the end of society’s efforts to include its minorities.
Gene-editing: an economic privilege?
In addition to discrimination based on disability and race, gene-editing might just become a new “risk of exacerbating the gap between the rich and the poor”(2). Indeed, technology and its widespread use has always raised economic questions of access. Genetic modification is not an exception to that. Several thinkers have pointed out the fact that this is a place where economic inequalities could be even more visible and create even more inequalities. Rich people will probably have the means to pay extra for better enhancement(1), “especially when fertility clinics start offering ‘genetic upgrades’ to those able to afford them”(7). In Dr. King’s words: “What you get is social inequality written into DNA”(9).
To respond to this unequal access argument, some thinkers have put “the costs will drop” argument forth:
[I]sn’t this reproductive revolution going to be the prerogative of rich elites in the West? Probably not for long. Compare the brief lag between the introduction of, say, mobile phones and their world-wide adoption, with the 50 year time-lag between the introduction and world-wide adoption of radio; and the 20 year lag between the introduction and world-wide penetration of television. The time-lag between the initial introduction and global acceptance of new technologies is shrinking rapidly. So of course is the price. [13]
Indeed, with the CRISPR technique, genetic editing could be affordable; some even argue that the cost of gene sequencing will fall below $100 over the next few decades[14]
However, we have to keep in mind that CRISPR remains an experimental technique. It seems quite difficult to accurately evaluate the costs of gene editing technology. Despite expecting continued reductions in the cost for human genome sequencing, the National Human Genome Research Institute indicates that:
Accurately determining the cost for sequencing a given genome (e.g., a human genome) is not simple. There are many parameters to define and nuances to consider. In fact, it is difficult to cite precise genome-sequencing cost figures that mean the same thing to all people because, in reality, different researchers, research institutions, and companies typically track and account for such costs in different fashions.[15]
To predict how long gene-editing technology will take to become affordable is even more difficult. As for every new technology, the first ones who will be able to use it and benefit from it are wealthier people, those who already possess social and economic advantages. This way, it seems obvious that gene editing technology will add to the concentration of wealth and other assets in the hands of the same people, further increasing inequality.
A perfect life driven by performance
Until now we have focused on the impacts genetic engineering might have on society, but we have yet to explore the roots of our desire to edit our genes — may it be to prevent diseases or enhance our abilities. The transhumanist movement is rooted in the belief that humankind is biologically imperfect, and that technology and science should be put to use to achieve super-intelligence, super-wellbeing, and super-longevity[16] as a way to eliminate suffering in the world. In the words of Zoltan Istvan, “the human body is a mediocre vessel for our actual possibilities in this material universe. Our biology severely limits us. As a species we are far from finished and therefore unacceptable”[17]. Gene editing would provide us with an indispensable tool to achieve superior capabilities and satisfy the transhumanist’s drive for biological performance.
This thought-process is reflected in Gattaca as well, specifically in a scene where the director of Vincent’s space mission praises the merits of his astronauts.
Here, the director talks about having come to a place in history where we can have “bodies with minds to match”. Indeed, flawed human beings are slowly disappearing with the help of gene editing, and everyone is pushed to “reach their potential”. The same drive for performance transpires here, with the notion that the physical and the intellectual potential of a person are intrinsically tied together, and that they must be pushed further through biological means. In transhumanism, as well as in the ideology behind the mission director in Gattaca, it is implied that biology determines our ability to achieve greatness. Indeed, “there is a beautiful simplicity to the notion that we could fix all our errors”(12) with a gene-modifying procedure.
However, Vincent himself is the embodiment of a contradiction to this argument: he suffers from heart disease, and yet excels in his intellectual endeavors. He breaks free from his biological shackles and outperforms himself by going beyond his potential — something the director adamantly insists is impossible. Even his surname “Freeman” seems to predestinate him to a lifelong battle against biological determinism. Are we determined by our genetic predispositions, or are we free to go beyond what is expected of us?
The character of Eugene also seems to undermine the idea that performance and greatness are the keys to fulfill human life. Eugene is said, him, to carry “the burden of perfection”. Even his name “Eugene” is a derivative from the term “eugenics”, coined in 1883 by Sir Francis Galton, which means “good in birth” and targets the improvement of the human race[18]. Predestined through his birth for greatness, he is tortured by the drive for perfection. His disability and his silver medal from a swimming competition constantly remind him of the potential he has failed to reach. This character shows that a life spent obsessing over one’s achievements and performance is one that corrupts life itself. As Vincent outperforms himself and shoots for the stars, Eugene “underperforms” himself and commits suicide, wearing the silver medal as a testament to his underachievement. Both characters are glaring examples of the limitations brought by biological determinism.
Gene editing will question our capacity for free will and the degree to which we are subjected to biological determinism. It might lead to a race for performance, with generations of parents wanting to create the most successful child, and leaving out any measure of success but the genetic predisposition of someone.
Parenting And The Freedom of The Child
Not only does gene-editing question our capacity for free will in regards to our biological dispositions, but it also questions the place of free will within a parent-child relationship. Indeed, Francis Collins, a figure of opposition against genetic engineering, remarked that “individuals participating in research (should be) giving fully informed consent”, and that embryos “can’t give consent to having their genomes altered from what nature would have made possible”[19]. As consent cannot be given, we are essentially forcefully intervening in the genetic makeup and identity of another human being. Can we be respectful of a human being’s integrity when we routinely change that very integrity according to our whims?
However, some say that it is precisely the job of a parent to make decisions for their children(11), and that we already bend our children to become certain kinds of people through education(19). Following this train of thought, consent and free will are not concepts that can be applied to children: it is the duty of parents to secure the best possible life for their child. Of course, the idea of the “best life” is influenced by the parents’ values, but again, so is the education that they provide. Besides, when a child refuses to eat their broccoli, are parents simply to respect their free will and let them eat candy all day? Certain decisions have to be made in the interest of the child, and not all of them can be made with consent.
This problem is exposed in a scene in Gattaca, where Vincent and his partner Irene go to a live piano performance together.
In this scene, it turns out that the performing pianist was genetically engineered to have 12 fingers instead of ten, making him able to play the piano piece. This means that his parents had already made a career choice for him before his birth, leaving little to no choice for this person to become anything but a virtuoso musician. One can reasonably doubt the fact that this child would have become a pianist if he had not been programmed to. Is the pianist fulfilling his own dreams, or his parents’?
The authors Brighthouse and Swift underline that the drive to “creative self-extension”, which motivates parents to “create their own children” as a way to re-create a version of themselves or accomplishing their own goals vicariously, is something that can harm the child[20]. This train of thought creates a narcissistic model that will hamper the child’s development and not be beneficial to its wellbeing.
It also reinforces a rapport between parent and child that is quite consumerist, tailoring the “product” to the “customer’s” liking. According to Dr. King, “we are erasing the fundamental ethical difference between consumer commodities and human beings”(9). He insists that parents should not write their “whims and prejudices” into the genes of their own children. In fact, what makes parenting so valuable, is that it is “an exercise in maturation because while the parent has the control that he needs in order to carry out his caring and fiduciary tasks for the child, he simultaneously learns that one should not control another person in the way he might like, and learns how not to exercise some of the control he does indeed have”[21].
Gene editing does not leave any room for freedom in the child’s life, especially when it is about enhancing its abilities. One might say that it is a parent’s duty to make sure that their child does not suffer from a dangerous and life-threatening genetic disease, but that their power should not overstep the boundary of the integrity of the child. Parents must exercise good judgement to realise which choices are made to protect the child, and which are made to mould the child to their liking. This equilibrium is, in our opinion, one that necessary, albeit difficult to strike.
Conclusion
In conclusion, the strongest argument in favor of gene-editing is that of the ethical duty to protect people from certain deadly diseases. However, we should be extremely careful about setting boundaries when it comes to human enhancement. If public authorities do not tread carefully and restrict people’s ability to pick and choose their favorite traits, the social and biological consequences could be disastrous. This is why we are advocating for a tight regulation of gene-editing, and a ban on human enhancement. An enhanced biological performance is too light a reward compared to the ills that such technology would cause on a large scale. And in the end, perhaps imperfection is not as despicable as we make it out to be. In the words of Okakura Kakuzo, we must try “to find beauty in our world of woe and worry”[22].
REFERENCES:
[1] BELLUCK, P. (2017, August 2). In Breakthrough, Scientists Edit a Dangerous Mutation From Genes in Human Embryos. Retrieved from: https://www.nytimes.com/2017/08/02/science/gene-editing-human-embryos.html?_r=0
[2] PLUMER, B. (2017, February 15). Scientists can now genetically engineer humans. A big new report asks whether we should. Retrieved from: https://www.vox.com/science-and-health/2017/2/15/14613878/national-academy-genome-editing-humans
[3] GYNGELL, C. (2015, May 1). The case for genetically engineered babies. Retrieved fom: https://www.theguardian.com/science/2015/may/01/fear-of-designer-babies-shouldnt-distract-us-from-the-goal-of-healthy-babies
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[5] The Economist — Genetic engineering. (2017, August 5). Researchers get better at tweaking the genomes of human embryos. Retrieved from: https://www.economist.com/news/science-and-technology/21725748-dna-and-how-adjust-it-researchers-get-better-tweaking-genomes-human
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[7] BELLUCK, P. (2017, August 4). Gene Editing for ‘Designer Babies’? Highly Unlikely, Scientists Say. Retrieved from: https://www.nytimes.com/2017/08/04/science/gene-editing-embryos-designer-babies.html?_r=0
[8] MCFADDEN, J. (2016, February 2). Genetic editing is like playing God — and what’s wrong with that? Retrieved from: https://www.theguardian.com/commentisfree/2016/feb/02/genetic-editing-playing-god-children-british-scientists-embryos-dna-diseases
[9] KING, D. (2017, August 4). Editing the human genome brings us one step closer to consumer eugenics. Retrieved from: https://www.theguardian.com/commentisfree/2017/aug/04/editing-human-genome-consumer-eugenics-designer-babies
[10] DEVLIN, H. (2016, December 2). Kazuo Ishiguro: ‘We’re coming close to the point where we can create people who are superior to others’. Retrieved from: https://www.theguardian.com/science/2016/dec/02/kazuo-ishiguro-were-coming-close-to-the-point-where-we-can-create-people-who-are-superior-to-others
[11] HARRIS, J. and DARNOVSKY, M. Pro and Con: Should Gene Editing Be Performed on Human Embryos? Retrieved from: https://www.nationalgeographic.com/magazine/2016/08/human-gene-editing-pro-con-opinions/
[12] CUSSINS, J. (2015, December 7). Should We Genetically Modify Our Children? Retrieved from: http://ksr.hkspublications.org/2015/12/07/should-we-genetically-modify-our-children/
[13] PEARCE, D. 2007. The Abolitionist Project. Retrieved from: https://www.abolitionist.com
[14] Illumina, Inc. (2017, January 9). Press Release: Illumina Introduces the NovaSeq Series — a New Architecture Designed to Usher in the $100 Genome. Retrieved from: https://www.illumina.com/company/news-center/press-releases/press-release-details.html?newsid=2236383)
[15]National Human Genome Research Institute. “The Cost of Sequencing a Human Genome”. Retrieved from: https://www.genome.gov/27565109/the-cost-of-sequencing-a-human-genome/)
[16] British Institute of Posthuman Studies. (2013, November 5). Posthuman: An Introduction to Transhumanism. Retrieved from: https://www.youtube.com/watch?v=bTMS9y8OVuY
[17] ISTVAN, Z. (2016, April 21). Transhumanism and Our Outdated Biology. Retrieved from: https://www.huffingtonpost.com/zoltan-istvan/transhumanism-and-our-out_b_9749138.html
[18] LEWIS, R. (2017, September 21). White Supremacy: The Dark Side of Eugenics. Retrieved from: http://blogs.plos.org/dnascience/2017/09/21/white-supremacy-the-dark-side-of-eugenics/
[19] SKERRETT, P. (2015, November 30). A debate: Should we edit the human germline? Retrieved from: https://www.statnews.com/2015/11/30/gene-editing-crispr-germline/
[20] Harry BRIGHOUSE and Adam SWIFT, “The Goods of Parenting”, F. Baylis and C. McLeod (eds.): Family-Making: Contemporary Ethical Challenges, 2014, p14
[21] Harry BRIGHOUSE and Adam SWIFT, “The Goods of Parenting”, F. Baylis and C. McLeod (eds.): Family-Making: Contemporary Ethical Challenges, 2014, p6
[22] Okakura, Kakuzo, “The Book of Tea”, Penguin Classics, 1906, p38