The dangers of scientific research into biotechnology in the not-too-distant future is a dystopian science-fiction trope that lingers in the popular imagination.
We are now on the cusp of the realisation of sci-fi speculation, with biotechnology able to edit the human genome to “correct” physical and cognitive genetic impairments. Potentially, we could even enhance our physical and intellectual abilities. The technology to do this is new, relatively cheap and accessible. However, references to dystopian scenarios as prefigured in Brave New World are so widespread that there are even research articles on its prevalence and effects on popular understanding of the technology.
The rapid acceleration of genetic biotechnology has changed the ethical debate from the distant and hypothetical to the immediate and real, particularly in the absence of international regulation and social consensus. Genetic biotech innovation has outpaced the capacity of governments and society to adapt to the changes that new technologies bring. Nor have we adequately considered how this innovation may affect labour markets, perpetuate inequalities and prompt profound ethical questions: If a child will be born with a severe defect, is it unethical not to treat them if we can remove it? Who decides that it is a defect in the first place? How do we address the consent of future populations? How will the technology be used in different socio-political contexts? Should parents have the freedom to genetically enhance their offspring?
The urgent need for international consensus and regulation has happened quicker than scientists, politicians and ethicists imagined. In 2018, like the beginning of a Black Mirror episode, biophysicist Dr He Jiankui infamously reported to the Second International Summit on Human Gene Editing that he had successfully edited the genomes of two twins born earlier in the year. He innocuously nicknamed them “Lulu” and “Nana.” He Jiankui claimed to have disabled the CCR5 gene, a protein that allows HIV to enter immune cells, potentially protecting the twins from their father’s HIV. The elated scientist expected applause and adulation for his groundbreaking work, but instead he was confronted with shock, outrage and silence by the scientists and media present. They accused him of extreme ethical naivety and were gobsmacked by his obliviousness to the safety, moral and social issues involved. Immediately after the presentation, Nobel prize-winning biologist David Baltimore, chair of the summit’s organising committee, expressed his disgust and disappointment that the experiment occurred. He lamented the role that the scientific community played, stating that there had been “a failure of self-regulation by the scientific community.”
Despite the best intentions, He Jiankui did many things wrong: He breached safety protocols by experimenting on embryos that would become people, without receiving ethics approval from a recognised university; he offered financial incentives to the experiment’s participants; and he implemented a dubious consent process, with consent forms written in technical English despite participants’ inability to read the language. Most pointedly, he failed to consider the great unknowns of the experiment—the downstream effects and coinciding risks associated with the edits. He Jiankui had broken the immutable but fuzzy “laws” that distinguish scientific research and clinical application. His university expelled him, and he was sentenced to three years in prison, fined 3 million yuan, and the research paper was never released. After the trial, which was closed to the public, China’s state media revealed that He Jiankui had also edited a third baby—a detail that was previously undisclosed. Lulu, Nana and the unknown third baby are the world’s first human GMOs. It is too early to know if the experiment even “worked.” The sequel will be released in 20–30 years’ time.
He Jiankui used a revolutionary breakthrough gene-editing technology called Clustered Regularly Interspersed Short Palindromic Repeats, known by the acronym CRISPR, which won Jennifer Doudna and Emmanuelle Charpentier the Nobel Prize for Chemistry in 2020. Developed in 2013, it is akin to the holy grail in gene therapy, even though Dounda reflected, echoing J. Robert Oppenheimer’s concern about the Nuclear bomb, “the power to control our species’ genetic future is awesome and terrifying. Deciding how to handle it may be the biggest challenge we have ever faced.”
CRISPR-based technologies rewrite parts of the genetic code of living organisms, from bacteria, viruses and animals through to humans. CRISPR acts on the DNA sequence found in bacteria designed to destroy viruses, with specific protein enzymes such as Cas9 (currently the most widely used and best understood protein enzyme) cutting out a defective DNA strand. CRISPR enables geneticists and medical researchers to change parts of the genome, altering, removing or adding healthy replicas to the DNA strand—a genetic editing version of the find and replace function in word processing software. CRISPR can also turn a DNA sequence off or on, and means that scientists can control the genes expressed in humans, animals and plants, removing undesirable parts and adding potentially desirable traits.
CRISPR technologies have fostered democratisation in gene editing, reducing the cost of gene-editing by 99 percent, thus making it highly accessible—anyone with access to a medical lab can use it. It also reduces the time of experiments from years to weeks.
The potential healthcare benefits of CRISPR technologies and subsequent, more precise iterations are unprecedented; no other biotechnology offers such promise to combat the scourge of diseases that cause the suffering and death of so many people. The technology could make medical conditions with a genetic component a thing of the past. Clinical trials are underway, examining “cures” for HIV, herpes, blindness, cystic fibrosis, Huntington’s disease, blood disorders such as hepatitis B, and various cancers. In 2017, scientists used CRISPR-Cas9 to repair a mutation in an embryo that could cause a heart defect. However, unlike He Jianku's experiment, the researchers discarded the embryos after the clinical trial. CRISPR technologies could liberate future generations from the terrible, pervasive diseases and resultant suffering and death that we accept as part of the human condition. That’s a good thing, right?
There are two different categories of gene therapies: human germline genetic modification (HGGM) and somatic editing. Somatic editing involves medical intervention in existing people, so the edit is limited to the individual; when they die, the edit dies with them. Most, if not all, scientists, bioethicists and the general public support this type of editing, as it is similar to medical interventions like surgery, medications and radiation that patients already undergo. However, germline editing, which Lulu and Nana received, involves editing heritable DNA found in sperm, eggs and embryos. Overt ethical concerns are raised by the possibility of permanent changes that edited people will carry and pass on to their children and their children’s children. If Lulu and Nana have children, they will pass on the edit. The modifications will be spread over generations and could potentially change the whole human gene pool. The risks and uncertainty involved in germline editing mean that many scientists support clinical research but are hesitant about its clinical application, that is, the real-life editing of human embryos and the advent of genetically modified ‘designer babies’. Significantly, for those evaluating the ethical implications, the technology has non-medical or “recreational” enhancement applications such as modifications to eye and skin “imperfections”, strength, height and even (once decoded) the genes associated with agreeableness and intelligence.
In 2019, eighteen scientists from seven countries called for a global moratorium on heritable genetic editing until a legal, globally enforceable policy framework can be implemented. It did not call for a ban on research into germline editing, but rather its application to human populations. The scientists argued that the associated risks are too uncertain and too consequential. The call for a moratorium split the scientific community and ultimately, now that the technology exists, a temporary prohibition is not sustainable in the long term.
By 2020, law only prohibited germline editing in 24 countries, while nine other countries offered guidelines. In July 2021, The World Health Organization (WHO) released the world’s first global recommendations for a governance framework for germline and heritable editing. Recommendations include leadership by the WHO and the director-general; international collaboration for governance; a global registry for all human genome experiments; prevention of ethics dumping, where researchers or companies move to countries without stringent regulations; support for whistle-blowing; and fair access to countries that allow patents to use genetic engineering technologies. While this is an important step, many fear that the WHO cannot enforce any of its recommendations, leaving it up to nations to make their own idiosyncratic frameworks… or not.
The moral imperative for genetically modified designer babies
Dr Kevin Smith is a senior lecturer at Abertay University, Scotland, who specialises in bioethics and genetics. In the wake of the He Jiankui controversy, he made academic and popular waves by releasing a research paper arguing that genetically changing the germline is both “ethically justifiable” and “highly desirable.” This perspective was starkly at odds with the caution expressed by most scientists, ethicists and governments worldwide.
The backbone of Smith's argument is a utilitarian perspective, a moral theory that aims to promote happiness and reduce suffering, encased in the famous maxim: “The greatest good for the greatest number of people.” As the maxim declares, at a social level, utilitarianism seeks the betterment of society by evaluating the consequences of a particular action or set of actions and offering the best consequence to as many people as possible. Smith contends that germline editing is a morally virtuous action because it will correspond to a reduction in suffering and the betterment of the human species.
“Utilitarians do not constitute a monolith, and some utilitarians will no doubt disagree with me,” Smith notes. “But I believe that most utilitarian analyses will, or should, lead to the same position: namely that human germline genetic modification (HGGM) ought to be permitted and indeed encouraged.”
Smith believes germline modification through CRISPR will massively reduce human suffering and social burdens resulting from genetic diseases, especially as our understanding of genes increases.
“There is potentially no limit to the range of genetic diseases that could in principle be treated,” he contends. “One would have to know what the underlying genetic basis for a disease was in order to know how to modify the genome to correct it, and for many conditions, we must await the progress of genetic science for the necessary elucidations.”
In the meantime, Smith asserts that germline editing through CRISPR offers the only solution to multiple genetic disease conditions. He notes that widely available technologies such as pre-implantation genetic diagnosis (PGD) and prenatal tests (e.g. Maternal cell-free foetal DNA testing) cannot effectively treat simultaneous disease conditions because they depend on discarding affected embryos and foetuses; it is simply not possible to generate the necessary amount of embryos and foetuses from prospective parents.
Despite the clear rationale of Smith’s viewpoint, it remains a minority perspective, and it is a minority status that is unlikely to change soon. Smith knows this, noting, “There are of course many non-utilitarian viewpoints, of which many (perhaps most) may be opposed to mine. On the one hand, it would be necessary to convince such non-utilitarians that their basic ethical outlook is sub-optimal and that they should instead be utilitarians—a tall order, I’m afraid!” Smith is more hopeful that the many people seeking to reduce harm and suffering in the human population will see that technological interventions on the germline offer a means to do precisely that. Smith, like most utilitarians, believes that change through democratic processes is the best way to accrue the benefits of new technological progress and overcome widespread dystopian fears. He believes that COVID mandates tread a similar line.
“Mandating vaccination is supported by utilitarian reasoning, on the grounds of maximising health and reducing suffering,” Smith says. “However, this must be tempered with the risks of alienating sectors of the public, which might lead to widespread distrust in medical authorities—i.e., a worse outcome overall, and thus one to be avoided on utilitarian grounds.”
Slippery slopes and putting the person back into our conceptions of disability and disease
Several prominent academics argue that scientists, bioethicists and medical practitioners should not be the people solely informing ethical discussions about editing the human germline. They say that their ethical frameworks relative to medical safety, beneficence and informed consent are too limited to consider the possibilities of such editing appropriately. For example, Dr Sandy Sufian, Professor of Disability and Human Development at the University of Illinois, Chicago; and Dr John H. Evans, the Tata Chancellor’s Professor in Social Sciences and the co-director of the Institute of Public Ethics at the University of California, San Diego, could not have a more different view than Smith.
Earlier this year, Sufian composed an op-ed with collaborator Dr Rosemarie Garland Thompson for Scientific American titled “The Dark Side of CRISPR,” arguing that the technology’s potential to “fix people” is a direct threat to the people society regards as “biologically inferior”. Their concern is also with the unreflective assumption that removing genetic disease through technology is actually beneficial for sufferers and society.
“This is a technology that will be used with people, affecting people, affecting the social world, in terms of who inhabits the world,” Sufian says. “When you are conceptually detaching a technology from the person, then you can claim that it is not against people with disabilities per se, and you can make the argument that it is a universal good.”
Sufian believes that most people think germline editing technology is inherently beneficial and that this applies even to the people with the genetic condition that could be targeted for elimination. This is because of the common perception that disease is bad and should be avoided or eradicated. Yet Sufian and Garland think that people cannot be reduced to their disease exclusively—it is a small portion of their human experience—and instead of eliminating the disease, the priority should be maximising the human potential of the affected person.
Evans, for his part, has applied a sociological ‘slippery slope’ metaphor to describe the ethical implications of germline editing. He argues that CRISPR technologies, coupled with a reductionist medical ethical value system, have breached the ethical limit between genetically targeting somatic disease and editing for enhancement, a line that societies have traditionally used to prevent unethical experimentation on humans. His 2020 book, The Human Gene Editing Debate, describes this nondeterministic slippery slope as having step A at the top, the most meritorious action, such as physician-assisted euthanasia or somatic genetic editing for severe disease, which is the least controversial, to step D at the bottom of the slope, the most maximally objectionable action, such as involuntary euthanasia or non-therapeutic genetic modification for enhancement in capabilities and traits such as intelligence.
Evans argues the descent down the slope is encouraged by the social normalisation of interventions, which increases the odds of accepting and legitimising more ethically controversial interventions further down the line. This process occurs in many domains and is arguably a key feature of how cultures change; a normative process rather than an aberration. Evans offers the following description of how descent down the slope could occur with genetic editing:
Everyone agrees that targeted gene editing for somatic sickle cell disease is morally virtuous. So, let’s get on the slope and do that. There are people suffering. The problem is that you have now changed the conditions for step B: I’m used to the idea of genetically modifying humans now, so I guess [I can consider step] B where I’m not modifying sickle cell but something like genetically caused deafness. Well, it’s kind of a disease, but it’s also kind of not a disease, but I’m kind of used to this, so I’ll go there—so that becomes normalised... At the bottom is the Brave New World or Gattaca situation, which is a society where people are designed for particular genes for particular purposes.
Concept vagueness: conceptual confusion leading to slips down the slope
Evans believes slips down the slope occur incrementally in tiny steps because of a process encouraged by ‘similarity vagueness'. Similarity vagueness occurs when it is impossible to distinguish between two points on the slope. In debates about the ethics of gene editing, the ambiguity between distinctions such as ‘health’ and ‘disease’ underlines the problem.
“What is the [ethical] distinction between heart disease and a predisposition to breast cancer?” Evans asks. “You couldn’t even write an essay describing the difference between those two ethically. They are hopelessly vague.”
Evans maintains that ethically two points on the slope become the same if they are justified using the same moral value. He explains: “For example, you can use human gene-editing to stop someone being born with sickle cell anaemia and adult-onset heart disease if both are justified by the value of beneficence or the relief of suffering.”
Sufian is similarly critical of the medical paradigm and its understanding of disability and disease and its over-investment in the concept of “cure.” Like Evans, she notes that most disabilities and diseases occur later in life through accidents, or through birth or lifestyle factors such as lung cancer. Sufian believes that the scientific quest to rid humans of diseases and disabilities is a dangerous ideology and ultimately implausible. Diseases and disabilities are not just going to disappear as a result of novel technological interventions, they are just going to take new forms due to ignorance about the long-term consequences of altering people’s genetic makeup.
Sufian reasons that the huge cultural investment in cures is fuelling the race to genetic normalcy. For Sufian, even the idea of a cure is questionable, and a lot of the measures for cures are artificially constructed. For example, if a patient reaches the five-year survival rate after developing cancer, they have reached the measure associated with ‘cure,’ even though cancer may be still present within them. They are not cured of cancer, they have just reached a limited time-based measure.
Sufian's key point is that germline editing further confuses blurry distinctions between disease, health, disability and people. She believes there is a common misconception that disease is monolithic.
“The public and bioethicists conceptualise disease as completely detached from the social world,” Sufian says. “There’s no ontology attached to it. When in fact, my own studies show that disease is never detached from the social world; it is always interacting. That’s where disabilities studies come in, and the conception of disabilities is the interaction of impairment and environment.”
She also thinks that researchers using CRISPR technologies do not consider the severity of disease between different people. “Every disease has levels of severity. Not everyone is in the hospital, suffering all the time,” she says. “Some people suffer; that’s not to say that disease doesn’t cause suffering, it does.”
For Sufian, the focus should not be on eradication but good management of the disability and disease. “I am the perfect example of good management,” she observes.
Sufian’s cystic fibrosis could become a candidate for elimination via germline editing. She is disturbed that the technology can “erase the person because the technological intervention precedes them.” Yet she maintains less drastic environmental changes can overcome the limitations caused by genetic disease and disability. “You might have a mobility impairment,” she says, “but if you are living in a world with full access and ramps, it’s not a disability.” Throughout her own life, she has witnessed massive advances in the treatment of the condition and in quality of life. She recalls:
[I was] taking a nebuliser treatment with this humongous machine that was attached to this water vessel with hoses. There was no portability. Then we had something called ‘the vest’, which allowed a little bit of portability for airway clearance and better antibiotics. By the time I was in college, I was able to take my machine to Israel and live in Israel—so that changed my whole quality of life because I used [it] to travel by myself. Then we got Cayston® and Pulmozyme®, new medication, and now we have something called Trikafta,® which is pretty life-changing.
Life expectancy has grown tremendously actually, with better management, better science, and knowledge of what we can do to negate symptoms; people still die, but people also live and go to school and get married, and women are more easily getting pregnant [because of] this medication.
Evans agrees, noting that understanding disease has become a lot more complicated and fluid due to the human genome project and the advent of widespread genetic testing. Both factors have encouraged scientists to explore much more complicated diseases. In the early days, the targetted conditions were single-cell recessive diseases such as Tay-Sachs and sickle cell, which were clearly diseases. Yet subsequent research on the removal of the genes that promote sickle cell disease note that it may reduce a person’s natural immunity to malaria. For Evans, this highlights that the social context of a disease is important: in some environments, the genes may be mostly “bad” for you, but in others, the good the genes enable may outweigh the bad. If the genes promoted widespread disease or disorder in the human population and were exclusively bad, they would have been weeded out by evolution.
Smith agrees with the complexity of conceptualising disease but does not think this always causes a conflation between genetic variation and dysfunction—as Evans and Sufian appear to suggest. Smith agrees that disease, health and disability are fluid concepts. However, he points out that some phenotypic variation with the human population is to be expected and is just that: variation. And not all genetic variation needs to be categorised as beneficial or dysfunctional. Nevertheless, there are genetic conditions that do cause substantial suffering for most people with the disorder.
Smith thinks that now that we have the technology to intervene on the germline it is morally justifiable that we do. “We have to act in the best interests of the future person and maximise the likelihood that they will avoid a life containing more suffering than could be avoided,” he says.
Are current technologies enough? The limited therapeutic application of CRISPR
Smith emphasises that germline editing solves cases where no other treatments for the genetic disease are available, such as in vitro fertilisation (IVF) and pre-implantation genetic diagnosis (PGD). Yet the number of people requiring such treatment is minimal. Evans notes that, in the US, only one hundred or so couples at most are unable to use existing reproductive technologies because both parents are homozygous for a genetic disease such as sickle cell. For these couples, every embryo they produce is going to develop sickle cell. In contrast, for the vast majority of people who are sickle cell carriers, only 25 percent of their embryos will have sickle cell. Pre-implantation genetic diagnosis allows the couple to identify the embryos that have the disease, and they can then choose an embryo free of the disease. “Problem solved,” Evans concludes.
For the tiny number of couples unable to use IVF, Evans advocates adoption, even if some of those couples are concerned with genetic relatedness.
“I’m not the first one to point out that if people were not so concerned about genetic relatedness you wouldn’t even be having this discussion,” Evans says. “This is driving all reproductive technology. I would simply say, as someone who is a supporter of adoption, adoptive children are just as much someone’s children as genetically related children.”
For Evans, germline editing of severe disease is unnecessary, and certainly not worth the risks to the couple’s safety and the wider ethical and social implications that such editing involves. “The main argument against germline editing for disease is that you [would be] setting a policy that is really going to be used by 47 or so couples, so it’s very disproportional,” he says.
Smith doesn’t see this is as a justification to restrict germline editing. He believes the small number of people benefiting from the technology should not matter as “the yearning for relatedness is often a strong and enduring emotion, and fulfilling it would therefore be (assuming no serious health risks) desirable from a utilitarian perspective.” He welcomes the technologies Evans mentions but notes they cannot deal with multiple genetic disorders in the ways that HGGM could.
Bioethical reductionism and its impact on regulating policy and society
Evans believes that part of the ethical problem rests with those who have historically structured public bioethics debates and influenced regulating policy. In the United States, this has been scientists and medical professionals engaged in risk and benefit analysis. They also define the categories and distinctions used in the policy.
“The success of the bioethics movement in the United States, in at least the 1960s and 70s, was to force scientific and medical ethics to consider few other values besides autonomy, justice, and avoiding harm and doing good [for the patient],” Evans says.
According to Evans, the problem with scientific medical bioethics is that it provides a reductive ethical framework, developed in response to experiments on human beings, and is not necessarily relevant. Ethical validity requires that the participant maintain the complete freedom to choose what is done to them and give informed consent before the experiment begins. The framework also incorporates the research principle of beneficence (in which the welfare of the participant must be the goal of any study or trial) and justice, which protects unprivileged populations from experimentation and exploitation. Evans explains that once bioethics enters administrative policy through the government and National Institutes of Health and Sciences, the limited ethical framework is further reduced because bureaucratic entities, from the WHO to governments to hospitals, are invested in that which is as simple as possible and able to be calculated. Evans defines the administrative medical-scientific ethical code as “thin” ethics, comparing it to the limited functional language used in markets where people with different languages engage in economic transactions.
“You can turn up in a marketplace in Papua New Guinea and buy and sell stuff if you know Tok Pisin—which is a tactically stripped-down language—you can’t talk about philosophy, and you can’t talk about love,” Evans says. “Similarly, you can’t ask the important questions about these technologies using only four values.”
Evans argues that the four values invented for debates about human experimentation are applied to cloning, chimeric animals and human gene editing. This results in an ethical system that includes as few values as possible.
“It becomes a question about whether the act, such as gene editing, is in alignment with those values, particularly whether you have consent from the patient and whether it will harm them,” Evans says. “The beauty of this is that if you are a doctor in a hospital and you need to make an ethical decision, you don’t have to stop and get a PhD in philosophy first. It’s pretty easy to implement the system.”
He also highlights that therapeutic intervention and enhancement are already conflated in medicine—with non-essential elective plastic surgery being an example of widespread enhancement procedures.
Smith, echoing the ethical focus of the medical-scientific paradigm that Evans frames above, believes any ethical framework “must focus on primarily safety matters, plus the wellbeing of those involved.” He maintains that deontological concerns (whether the action itself is right or wrong) are irrelevant to the ethical framework he envisages—which includes the perspectives raised by Sufian and Evans about whether germline editing should or shouldn’t be used in the first place. For Smith, these concerns are marginal to an ethical framework premised on safety concerns relative to the consequences to the patient of the germline editing itself.
However, Sufian and Evans believe a bigger ethical perspective must be considered. Sufian is concerned that there are financial incentives for governments and insurance companies to utilise germline CRISPR technologies to reduce downstream treatment costs for the affected person.
“There is a cost to having chronically ill people or people with genetically based disabilities,” Sufian says. “It's expensive. I can tell you; my own life is very expensive. At least in America, but even in countries like New Zealand [with taxpayer-funded public health systems], governments are going to want to save money. Why wouldn’t they want to save all that money?” Sufian worries that the cost–benefit scenario may promote the social normalisation of germline editing.
As money shifts from drug development and management to CRISPR-based eradication to save money down the line, it may further reduce spending on treatment and management.
“So even now big pharmaceutical companies, including the one that created this life-changing medicine, Vertex [the company behind Trikafta®] which I am on, are continuing to improve upon it,” Sufian says, “but they are also investing in CRISPR at the same time... So where is it going to go in the end?”
Velvet eugenics: free market genetic enhancement, social inequality and other ethical issues with non-therapeutic enhancement
Sufian’s partner in her Scientific American Op-Ed, Dr Rosemarie Garland-Thomson, describes the process of social acceptance of the CRISPR technologies and genetic selection as a form of ‘velvet eugenics’. The paper notes: “Enforced by laissez-faire commercialism, rather than by the state, velvet eugenics seems like common sense, yet it hides its violence and inequality behind claims of patient autonomy and under a veil of voluntary consent.” Velvet eugenics is a smooth, subtle and unassuming form of eugenics, but ultimately has the same end as the overtly pernicious Hitlerian process of excluding certain people from the world.
Conspicuously, though, technology already allows us to breed our children selectively. Genetic selection to determine who is born and who isn’t is already a common medical practice and is not just a product of new gene-editing technologies. It’s not forced by malign eugenic dictatorships, but by the parents themselves through prenatal screening and IVF. Down syndrome has literally been wiped out of Iceland’s population pool, with over 85 percent of parents deciding to abort rather than keep an affected foetus to full term. Similarly, in 2019, only seven children were born in Denmark with Down syndrome. Considering these statistics and the lack of regulation of IVF in most countries, including the US, Sufian worries the same thing will happen with CRISPR gene editing on a much greater scale.
“What just astounds me is that there is no national policy in the US around IVF,” Sufian says. “It makes no sense to me because you are in a petri dish creating a human being, and there is literally no policy around it. How has that happened? I would not want to go the route with CRISPR that Americans have gone with IVF.”
Commenting on reproductive technologies and Down syndrome, Evans cites a theory that people with Down syndrome are erased from the human population partly because they cannot meet the expectations of modern capitalism, as people with the condition are neither able to be autonomous consumers nor hold advanced jobs.
Sufian proposes that germline editing will further entrench social inequalities in accessibility. She wonders if access will be reserved for wealthy people in developed countries who can afford the technology—members from this group may also control and determine the application of the technology in their societies and in others. Like racial disparities in access to surgeries, the use of CRISPR technology is likely to increase racial divergences in specialist healthcare. Coercion to use the technology is also a possibility, with women and families (particularly from low-income communities) pressured by governments, institutes of health and insurance companies—all trying to save money on treatment and management down the line. The greater social inequalities that the technology may fuel are currently unknown. Yet, according to Sufian, some are known: “We know that certain people will not be in the world.”
Evans agrees that lessons from eugenics need to be considered in an ethical discussion of CRISPR. He states that eugenic ideas are a recurring force in human thought and not just an outlier. He asserts that the drive towards progress and betterment is a countinuous force in human societies. Unfortunately, from an ethical standpoint, this drive is tied to a larger aim to improve the human species as a whole.
Evans notes that, since the enlightenment, it has underpinned scientific medical research in the West. CRISPR is only the latest product of this eugenic drive to improve the species. He states, referring to Lulu and Nana, “the first attempt to use CRISPR on a human was eugenic germline modification. The dream [of eugenics] lives on.”
Evans is less concerned about totalitarian dictatorships or rogue scientists enforcing eugenics than the technology allowing individuals the freedom to make choices with eugenic implications. He considers not so much the genetic elimination of the genetically diseased, but the potential of the technology to be used to “enhance” individuals and groups of people within the human species: a consideration that Smith, who is invested in the reduction of suffering caused by diseases and disability, has little to say about—though he is open to the technology’s potential to increase socially desirable traits.
“A more important distinction [is] between positional goods (such as enhanced height) vs intrinsically valuable goods (such as enhanced eyesight or memory), with restrictions being placed on the former,” Evans says. “Utilitarians are interested in societal outcomes, and permitting the pursuit of merely positional goods using HGGM may well reduce utility overall.”
Evans explains that it is a sociological truism that people use their power to protect their privilege, and this is a simple fact of human societies; wealthy parents instinctively seek to concentrate advantage for their children. Evans emphasises that privilege was previously concentrated along economic and ethical lines. However, sociological literature now suggests the primary determinate of a person’s mate relates to their shared educational status. Wealthy parents send their children to private schools and top tier universities, not only to get a first-class education but for better life chances and the potential to meet, and perhaps marry, another person from the same group. This helps perpetuate the social advantages of the exclusive environment. Similarly, parents competing to enhance their child’s economic and social opportunities may use CRISPR to secure genetic advantages. Evans thinks “the [use] of genetics to perpetuate advantage was what was going on implicitly in the eugenics era, and that lesson continues through.”
Evans, unlike Smith, is deeply troubled about the possibility of the technology being used to genetically enhance traits and attributes that are perceived as socially desirable or intrinsically valuable.
“In the prototypical case, and to simplify, this could involve genes or sets of genes that relate to functional features of socially accepted definitions of intelligence such as memory or attention,” Evans explains. “The argument for germline editing of such functional features include at one end, a radical personal freedom perspective in which parents believe it is their choice to maximise their children’s chance to succeed in life and [at] the other end, a traditional eugenic application in which genetic editing for such functional features would over time make humanity better.”
Evans’ response to the first position is that, in liberal democratic societies, individuals have freedoms until their freedoms impact another person. Restrictions range from road rules, non-smoking policies and noise control, to more obvious restrictions against theft and homicide. Evans thinks that the ethics of genetic modification are further complicated because reproductive rights are entangled with the right for women to have complete control over their reproductive choices.
“[It's] essentially autonomy of reproduction—and it is a very powerful argument in the US and the West,” Evans says. “The entire logic of the abortion debate gets applied to that scenario,” he reasons. Sufian echoes this point, raising unconformable questions about the convergence of genetic selection technologies and women’s reproductive rights.
Societies could allow parents to have the personal freedom to choose whether they want to change or enhance their children. However, unlike abortion rights, germline modification for non-therapeutic enhancement affects other people’s freedoms. If one family engages in the genetic enhancement of their children, the actions impinge on the liberty of parents that do not. Hyperbolically, Evans notes, “If you create your child to be 200 percent smarter than my child, that impacts my child.”
Evans is also highly sceptical of genetic enhancement to make humanity “better.” He thinks it rests on a doubtful notion: “People don’t reflect upon what’s the point of having the human species be smarter? What good does that do us? Does that make us happier? I don’t think so. There is no evidence of that. So why bother?”
A more pernicious, though subtle, result of non-therapeutic treatment is that it challenges assumptions at the core of human rights: that all people have equal and unlimited value through being born. Evans thinks that in both therapeutic and enhancement situations the technology ties a human’s worth to their capacities and capabilities, “especially when they are inscribing the difference into their bodies themselves.” Evans proposes that genetic enhancement would lead to an objectification of human beings, with the worth of humans linked to their capabilities rather than their intrinsic worth as humans born into the world; a position that Sufian agrees with. He continues, “If everyone learns—like in the movie Gattaca—that people with this sequence are better, you are not considering humans to have unlimited value.”
Ethics for everyone: the need for a fully elaborated ethical framework
Both Evans and Sufian champion external regulation and limitations placed on human germline modification as defined and decided by public consensus. Evans believes that people who are not constrained by the ethical frameworks of public bioethics and policy contexts have richer conversations about the possible social and humanistic implications of new technologies. These often complex conversations involving divergent ethical positions need to be nurtured and incorporated into public ethical discussions. People need to be reminded that in a democracy their opinions and values matter, and the form of conversation that happens in policy contexts is ‘a limited language’ and not the only one that can occur.
“You do not want to have your society determined by technological possibilities,” Evans states. “You want your society determined by the values of your society. Science should serve the needs of humanity and be defined by humanity.”
Sufian’s perspectives align with Evans’ position. She insists that policymakers need to include diverse viewpoints, especially those who are most affected by the technology. People with diseases and disabilities need to be consulted so that they are at the very heart of the policy and not just a token appendage. Sufian also advocates for an expansion of human potential and experiences. We should not be seeking to limit diversity and the types of people we have in society through genetic homogenisation. Society should instead promote diversity as a foundational value.
“We know that when we have different perspectives and different bodily manifestations of people, or mind-body diversity, then we have a richer and more robust society,” Sufian says. She maintains that germline eradication of genetic disease fragments society, where the opposite should be the aim. She notes that the early integration of disabled children into mainstream public education results in greater empathy, as well as children engaging in richer discussion about different people and cultures—particularly about disability culture. Early social integration, effective treatment, and management of disease results in “a less segmented kind of world that ideally, in my opinion, we would want to create.”
Smith believes public consensus and support is important for scientific progress. He worries that regulation and restrictions based on hypothetical potentialities could severely limit technological and scientific advances and stall the technologies’ latent ability to reduce human suffering caused by genetic conditions. His concern is that regulation must not be fear driven and politicised. Those resistant to gene editing need to be protected from misinformation about the technology and have their unfounded concerns addressed and resolved by people with a sound scientific understanding of the process.
Divergent ethical concerns about germline editing echo a wider separation of scientific and humanistic perspectives in contemporary society, an irony given that the endeavour of both is to serve humanity and enrich people’s lives. There are further variations in ethical perspectives within these disciplines, as shown in Smith’s contrasting utilitarian perspective. Biotech such as CRISPR highlights that the act of serving humanity is complicated and depends largely on the lens and the range in which you view the technology and its benefits and disadvantages. Taking a wider and more broad perspective allows scholars such as Evans and Sufian to consider the subtle, recurrent and potential social, cultural and political effects of new technology. This contrasts with the standard medical and scientific approach, which has a narrow and much more precise focus on developing, experimenting, testing and enhancing the ability of the technology to intervene and alleviate genetic disease and disorder.
Crucially, the one point that Evans, Sufian and Smith all agree on is that democratic ethics must underscore the eventual regulations of genetic editing technologies. Now that the technology exists and is accessible, managing how the technology is used is critical. Smith would insist that any international regulation is scientifically and medically consistent and evidence-based, and Sufian and Evans advocate that it is guided by caution and protects vulnerable people and communities from the potential negative impacts.
As the WHO takes its first tardy steps towards international regulation and agreement, transparency and open discussion by medical researchers, human rights groups, thought leaders, scholars from all fields, and the public all need to be considered and resolved as much as possible. Only then can the real ethical concerns overshadowing the use of CRISPR be overcome, and the massive benefits to human health and society harnessed.
