In November 2018, biophysics researcher He Jiankui rattled the realms of biotechnology, molecular biology, and the rest of the world as he faced an onslaught of condemnations. Headlines like “Genetically edited babies – scientific advancement or playing God?” and “Chinese scientist responsible for Designer Babies is facing Death Penalty” proliferated across mainstream media, as two distinct sides, one excited by the prospects by such technology and another horrified by potential pitfalls, debated the ethics of gene editing in humans.
Jiankui’s crime was illegally using CRISPR/Cas9 technology to edit the genome of twin embryos prior to inserting them into the mother to complete an in vitro fertilization procedure. The scientist’s YouTube videos speak of heralding a new era of genomic understanding and structuring. By disabling a gene involved in allowing HIV to enter cells, he would prematurely cure individuals of AIDS. Though seemingly noble, his conduct was irresponsible, as he carried out the project in secret and without proper consent from the parents of the embryos. Only time will tell if the procedure had detrimental effects on the proper development of the children. This case ignited a cascade of ethical dilemmas, revisiting discussions on conceptions of the human and humanness, and what angles to consider as gene editing moves forward.
What is CRISPR/Cas9?
CRISPR/Cas9 is a revolutionary genome editing tool. The mechanism was originally identified in bacteria and in 2012, biochemist Jennifer Doudna of UC Berkeley and French researcher Emmanuelle Charpentier found that the system could be modified and programmed to cut any gene of choice – a sort of “molecular scissors.”
It consists of two parts:
- Clustered regularly interspaced short palindromic repeats (CRISPR) referring to short segments of DNA that originate from previously invading viruses that have been chopped up and incorporated into the bacterial DNA.
- Cas9, an enzyme produced upon detection of invaders that have matching viral sequences.
Scientists can hijack this mechanism, with the help of a small piece of RNA called a guide RNA, to introduce mutations into target genes. When CRISPR/Cas9 cuts a part of the DNA, error-prone cellular mechanisms will attempt to repair that cut and, in the process, induce a mutation that may render the gene inactive. He Jiankui used this method to disable a gene called CCR5, which codes for a receptor often used by HIV to enter cells. 
Although there are other gene editing methods, in the seven years since the development of the modified CRISPR/Cas9 system, the field of gene editing has flourished. CRISPR/Cas9 is the most effective and cheapest tool available to modify genomes and is thus perhaps the greatest achievement in the field of genetics since the completion of the human genome project. From gene therapy clinical trials in single-gene disorders to creating a new species of yeast, CRISPR/Cas9 has proved itself a versatile tool, prompting businessmen like Bill Gates to pour millions of dollars into startups developing related therapies.
Somatic vs Germline Cells
As with any scientific advancement, the next question is that of potential application in humans. In multicellular organisms, any cell in the body aside from sperm and egg cells (germline cells) are called somatic cells. This distinction is relevant in gene editing as modifications to somatic cells are not passed on. In the past two decades, gene therapy has gained popularity as a potential cure for multiple genetic disorders, especially single-mutation conditions including Duchenne Muscular Dystrophy and Adenosine Deaminase Deficiency, with clinical trials in both children and adults with the latter showing promising results.  However, alterations in cells that would be passed on to progeny remain a biological taboo. In 2015, the International Summit on Human Gene Editing reached the following conclusions on germline editing:
It would be irresponsible to proceed with any clinical use of germline editing unless and until (i) the relevant safety and efficacy issues have been resolved, based on appropriate understanding and balancing of risks, potential benefits, and alternatives, and (ii) there is broad societal consensus about the appropriateness of the proposed application. 
Both the limits on this technology and the incomplete understanding of the human genome make mail-order babies seem like a distant dystopia limited to movies like Gattaca, where traits like intelligence and strength are set before birth with a single click. That said, collective agreement over the direction and application of gene editing is necessary, particularly before unforeseen consequences plague communities.
Treatment vs Enhancement
The most common and centric position to take with CRISPR/Cas9 (and similar tools that tamper with the genome) is that it should only be used for the treatment of defective genes, and not enhancement of desired traits. However, the line between treatment and enhancement remains ill-defined. Certain conditions may be considered deficiencies, but only within the context of potential gene editing. Moreover, for something to be an enhancement, ‘normalness’ must be defined. Disorders like anencephaly lie on one end of the treatment-enhancement spectrum, where even if a fetus makes it to full term, it does not survive more than a few days after birth. On the other end are wildly imaginative enhancements that transcend what exists naturally, such as abnormal memory capacity or superhuman strength. The middle, where most things lie, is unclear.
One example of such ambiguity is the debate surrounding deafness. Increasingly, activists call for deafness to be seen as something that does not have to be ‘fixed,’ and oppose cochlear implants. Would removing genetic causes of deafness be a treatment (thus assuming deafness is a defect and hearing is something to be restored) or an enhancement (an unnecessary advantage or improvement of what should be left to take its course)? Similarly, would editing genes responsible for forming an embryo to ensure a human would grow to a height of 6’ as an adult, rather than 4’, be a treatment or an enhancement?
Such discussions aren’t new. Plastic surgery is a typical example of a gray area between features that are perhaps uncommon or undesirable, but not immediate hindrances or severe detriments to one’s quality of life. Ambiguous definitions of what qualifies a human as healthy fuel this debate, and arbitrary definitions of what constitutes as a defect give room for gene editing to be misused. One thing is certain: we need to understand ourselves as humans prior to engaging in any novel altering technologies, lest we meet a slippery slope.
One way to conceptualize a term as vague as “slippery slope” is to look at other fields where the same moral questions arise, perhaps not as clearly but just as substantially. Gene editing raises ethical conundrums involving explicitly selecting for positive traits, which already exists to an extent with in vitro fertilization (IVF) and prenatal screenings. After screening, many embryos with lethal conditions, often chromosomal, are discarded.
The natural inclination parents have between fixation upon their own quality of life and wanting a life of ease for their children has been exacerbated by a culture that deems sentencing one to avoidable pain as the highest immoral act. Therefore it comes as no surprise that some contemporary ethicists argue that only the best children should be selected – a principle Australian philosopher and bioethicist Julian Savulescu calls ‘procreative beneficence.’
…procreative beneficence says that we should use that information to select embryos that have the best chance of the best life, other things being equal. So, if you have ten embryos, you ought to do genetic testing, and not only should you select the embryos which have the least disposition to disease… but also you ought to select in favour of those [which] have genes that have been associated with a better chance of a better life. 
His argument presses a moral obligation upon parents to select the best children given relevant data for the sake of enhancing humankind as a whole. In his paradigm, it is more beneficial to select for individuals that have the lowest risk of disease than to invest resources in treating said diseases after the fact. Whether this selection occurs through negative (disregarding undesirable embryos) or positive selection (gene editing embryos), it’s an echo from the eugenics of old. Conclusions like that of Savalescu’s are the logical outcome of an approach wherein scientism reins supreme. Thus, the Zeitgeist’s valuation of humanity’s limits excludes all that transcends beyond that which is scientifically possible. It is no shock that movements such as transhumanism, which views humans as machines–a sum of parts that can be fixed with the right tools, take their grip upon our ethical considerations.
Though Savulescu and similar advocates reject forceful compliance or eugenics programs, they measure the morality of selection and use of gene editing tools against a backdrop of what “propels mankind forward.” Of course, to build decisions upon such a catechism will prove disastrous, with barbaric population control efforts immediately coming to mind. To seek progress in this manner is based on the assumption that science alone can solve all of humanity’s problems, and that what ends can be accomplished will justify the means by which they are reached. For example, in the case of fetuses diagnosed with Down Syndrome, one woman invokes a lack of independence in society and financial burden as arguments for her right to abort, though it’s clear that many with the disorder lead fulfilling lives.
Nature vs Nurture
The aforementioned arguments are built on probabilistic measures. The burgeoning field of epigenetics illustrates this, as it is the one area where the pitfalls of genetic determinism (the idea that traits and qualities are a sum of and determined by what’s encoded in the human genome) and the limitations of tabula rasa (the theory that humans are blank slates that are then molded by external experiences) are addressed. Epigenetics describes mechanisms of gene expression, whereby the code itself (of a gene) can be the same but manifestations of said gene is modulated in part by environmental factors that act as “on-off” switches. A curious inquiry that follows is whether or not it is wise to tamper with nature (genes) prior to reforming nurture (our environment).
Claims of “choosing the best” don’t guarantee the child a pain-free experience of life and ignore the qualities external factors can and will impart upon them. A view of the genetic code as the sole underpinning of the human machine and the assumption that fixing glitches in the genome will result in predicted behavior and qualities assumes that one’s being and capacity is limited to nature. This is not to eliminate that side of the equation entirely, but rather to propose that any holistic body of guidelines on these technologies must grapple with the assumptions preceding arguments of outcome.
The debate thus transcends any fanatical fears of a dystopia – at least for now. It is not enough to make generalizations about wellness or suffering without addressing the implications those terms carry. Ethicists must take a step back and define the terms they use in their arguments with the understanding that the philosophies underlying the way the technology is undertaken will shape the route it takes and any potential consequences that may result. The uncertain language in International Summit, “based on appropriate understanding and balancing of risks, potential benefits, and alternatives,” is indicative of a landscape that had little foresight to outline what appropriate is before cases like Jiankui’s become commonplace. In an increasingly globalized society, the effects of conflicting perspectives on what should even be the operative paradigm within which solutions are proposed are amplified, as it is even more difficult to issue universal guidelines that are accepted and adhered to by all parties involved. He Jiankui acted rashly, but beyond his violation of informed consent and premature procedures, there is much to be desired in terms of that which should (or should not) be done.
- Steinberger, P et al. “Functional deletion of the CCR5 receptor by intracellular immunization produces cells that are refractory to CCR5-dependent HIV-1 infection and cell fusion” Proceedings of the National Academy of Sciences of the United States of America vol. 97,2 (2000): 805-10.
- Ferrua, Francesca, and Alessandro Aiuti. “Twenty-five years of gene therapy for ADA-SCID: from bubble babies to an approved drug.” Human gene therapy 28.11 (2017): 972-981.
- “Read ‘International Summit on Human Gene Editing: A Global Discussion’ at NAP.edu.” National Academies Press: OpenBook, www.nap.edu/read/21913/chapter/1#6.
- Wordsworth, Richard. “A Bioethicist Argues for Engineering Babies That Will Have an Easy Life.” Motherboard, VICE, 5 July 2016, https://motherboard.vice.com/en_us/article/bmv7qa/bioethicist-julian-savulescu-argues-for-engineering-babies-that-will-have-an-easy-life
About the Author: Heraa Hashmi is best known for her research project, Muslims Condemn, and is currently a student in Molecular Biology and Linguistics. Her interests include the Islamic sciences, cognitive linguistics, and language development. You can follow her on Twitter here.
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2 thoughts on “Gene Editing: The Problem of Progress”
Thank you, Heraa, for making this so elequently succinct. I don’t always understand the ins and outs of science, and you’ve made this simple to understand without sacrificing its academic value.
My son and I have talked some about CRISPR, and, while we both see it for it’s incredible benefits, we’re also both aware of the potential for misuse. The entire Brave New World implications of something like this trouble me. While the US can be amazingly stubborn about being forced to do something they don’t think they should have to do, I can’t help but wonder how many other countries with less bullheaded populations might find themselves adopting Savulescu’s ideals at sword point, so to speak.
Our innovations in science and medicine very often come from imperfections. What happens when there are no imperfections left? Everyone seems to want to live in a perfects world, but by what standard of perfection?
I’m not suggesting, and never would, that we not look for cures, treatments and preventions. I’m just wondering if we are ready to have those things without abusing them.
Hi! Apologies for the long, long overdue reply. I replied on Facebook at the time but think it’d be nice to have it here as well, especially after nearly a year of publication and how some of my thoughts on the matter have changed.
I appreciate the feedback on brevity, much of science can be communicated in a clear way.
I agree that using the uncertainty to completely reject any advances is reactionary and premature. There is quite a bit of potential for good, and Muslims are encouraged to seek cures and alleviate difficulties. But alongside this needs to be a clarity on the potential for misuse and harm, for “engineering” a perfect society when people have different understandings of perfection, infringing on rights, etc. The worry is that the technology will be ready before we have concluded these discussions.