<<

1 GENE EDITING: MEDICINE OR ENHANCEMENT?

Marcos Alonso, Jonathan Anomaly and

Abstract: In this paper we will discuss the status of gene editing tech- nologies like CRISPR. We will examine whether this should be considered a form of enhancement, or if CRISPR is merely a medical technology analogous to many of the common medical interventions of today. The importance of this discussion arises from the enormous po- tential of CRISPR to increase and welfare. If we interrupt or delay its investigation and implementation based on misconceptions about its nature and consequences, we may fail to achieve great benefits. Clarifying what CRISPR is and how it compares to other medical pro- cedures should create the right environment to discuss its development and introduction in society. We argue that gene editing is both a conven- tional medical technology and a potential human enhancer. It is important to separate these different applications. Just as in the debate, it is possible to sort out therapeutic gene editing from enhancement gene editing in considering regulation or policy. Keywords: Gene editing, enhancement, CRISPR, , .

1. INTRODUCTION

“Genetic modification is no longer ” (Juth, 2016, p. 416). For years, different techniques for gene editing, among which CRISPR appears prominently, have become viable (Smith et al., 2012, p. 493). Gene editing like CRISPR have been used in labs

Ramon Llull Journal_11.indd 259 29/4/20 11:35 260 ramon llull journal of applied 2020. ISSUE 11 PP. 259-276

for research, but they are likely to be applied to human embryos in the coming years. Gene editing is unavoidable, so we must confront its ethi- cal implications. The discussion we want to raise about the status of CRISPR is important for one reason. CRISPR technologies have started a revolution that could bring enormous benefits to humanity. But many people have a visceral fear of gene editing. Because CRISPR’s potential for health is so great, it is worth clarifying its status and determining if this gene editing technology is a tool that will radically change human nature (if it is a form of “enhancement”), or just another medical tool. CRISPR is a new form of gene editing developed over the last two decades. Its “ease of use, precision and efficiency” (Mathews and Lovell- Badge, 2015, p. 159), as well as its “speed and low cost” (Juth, 2016, p. 416), have put CRISPR at the centre of the discussion on gene editing. CRISPR has brought strictly theoretical debates into reality, provoking a great political and social impact. CRISPR’s applications in the coming years are expected to be widespread and transformative in areas as impor- tant as food and medicine. The first case of CRISPR’s use in human embryos took place in 2015, and generated great controversy. It is es- sential to understand the importance of this problem and to gain clarity on the ethical implications of CRISPR and gene editing more generally. It is not a matter of deciding what is right or wrong, for that is not some- thing that falls within the competence of specific individuals or groups; rather, it is a matter of “preparing ourselves and others to make respon- sible decisions” (Peters, 2019a, p. 79). CRISPR stands for “Clustered Regularly Interspaced Short Palindro- mic Repeats”. This gene editing technology dates back to Francis Mojica’s work in the 1990s on the immune system of the archeas, which would later be extended to the immune system of bacteria. In these investigations it was discovered that some archaeas and bacteria are able to detect invad- ing viruses and destroy them, thanks to the information on the DNA of these viruses stored in the spacers that separate certain palindromic se- quences of the mentioned archaeas’ and bacteria’s DNA. Jennifer Doudna, Emmanuelle Charpentier and Feng Zhang used insights from Mojica and successfully applied it to other organisms. Editing genes with CRISPR works by applying the Cas-9 enzyme, with the appropriate RNA guide, to cut and insert DNA at a specific location (Juth, 2016, p. 419). For years it has been tested in all kinds of plants and animals, includ- ing mammals, and in 2015 it was used in human embryos for the first time. For many, it was just a matter of time before it would be applied

Ramon Llull Journal_11.indd 260 29/4/20 11:35 Alonso et al. 261 GENE EDITING: MEDICINE OR ENHANCEMENT?

in , as happened very recently with the case of the Chinese twins whose embryos were edited with CRISPR by a team led by a rogue scientist in China, Dr. He Jiankui. Philosophers and novelists have been speculating about genetic engi- neering for many years. But these discussions now have a special urgency. In the year 2000, just on the threshold of the new millennium, the con- troversy between Jürgen Habermas and Peter Sloterdijk anticipated much of the debate that has continued into the 21st century. Sloterdijk, in his provocative Rules for the Human Zoo, put the incipient field of in continuity with education and other ways in which the human being has operated on himself and has been transforming itself for centuries. Habermas, in the opposite position, warned in his book The Future of Human Nature that gene editing threatened to undermine human dig- nity. Meanwhile, philosophers working on biomedical enhancement over the past two decades have tended to take a subtler approach to the issues. In particular, many of them focus on specific characteristics that genetic technologies might enhance, and discuss why it would be a good or bad idea to do so.

2. SHOULD GENE EDITING SUCH AS CRISPR BE CONSIDERED A MEDICAL TOOL?

2.1. THE THERAPY-ENHANCEMENT DEBATE

One of the recurring topics in the ethical discussions on new bio- medical technologies, and particularly on gene editing, is the difficulty in distinguishing enhancement from therapy. Definitions seem to make the distance between one and the other clear: therapy would be limited to restoring a normal state of health while enhancement would go beyond this normality, allowing the individual to reach capabilities out of the ordinary, or at least improvements within the normal range. The glasses that correct our myopia would be therapeutic, while an ocular implant that made perfect night vision possible would be an enhancement. How- ever, this dividing line becomes much more blurred when we think that what is considered “normal” or “medically advisable” depends on subjec- tive judgments or cultural norms that change over time (Daniels, et al.,

Ramon Llull Journal_11.indd 261 29/4/20 11:35 262 ramon llull journal of applied ethics 2020. ISSUE 11 PP. 259-276

2000). The distinction between therapy and enhancement is therefore morally irrelevant for some authors (Resnik, 2000, Sparrow, 2011, p. 34). Gene editing and CRISPR technology in particular represent a par- ticularly complex case in this regard. The various meetings and commit- tees have so far failed to reach any solid, even minimal, agreement on this matter (Mathews and Lovell-Badge, 2015, p. 161). The traditional distinction between therapy and enhancement is re- flected by the names of two prominent companies that focus on gene editing: “CRISPR Therapeutics” and “Editas Medicine.” The names of these companies suggest that they are devoted to medicine or therapy, not enhancement. We think this distinction is not as important as the distinction between whether an intervention increases or decreases human welfare, and whether an intervention alters the DNA of an adult through somatic cell editing or the DNA of an embryo via germline gene editing. This difference is important because, as Juth declares, “it is not farfetched to consider somatic genetic therapy through CRISPR analogously to any other kind of medical treatment” (2016, p. 419). Somatic level does not involve changes that pass from generation to generation, so its influence on the is no different from many other therapies. Surgical interventions are the most obvious ones, but even antibiotics can be said to alter specific parts of our organism, including our digestive system. The instruments and technology required for these genetic interventions also reinforce this similarity, as somatic cell interven- tions could be “administered to patients by simple injection” (Cathomen et al., 2019, p. 121). One concrete example can help us better understand this. The poster child of success in modern genetics is the treatment of the disease phenylketonuria or PKU. This is an inherited metabolic disorder in which the enzyme phenylalanine hydroxylase is missing. This means that individuals cannot metabolise the amino acid, phenyalanine. It is detected by heel prick blood test at birth. Individuals are put on a low phenyalanine diet for or else they have severe intellectual disability. This diet means no bread, pasta, soybeans, egg whites, shrimps, chicken breast, tuna, turkey, legumes, nuts, watercress, fish, crayfish, lobster; but also no such delicacies as seal, whale or elk meat. Such an environmental intervention is hugely demanding. Risk remains. The ubiquitous sweet- ener, aspartame, can cause a crisis. If an enzyme were developed to replace phenyalanine hydroxylase, this would be a cure. Such a cure should be given just as a blood transfu-

Ramon Llull Journal_11.indd 262 29/4/20 11:35 Alonso et al. 263 GENE EDITING: MEDICINE OR ENHANCEMENT?

sion should be given for severe bleeding, or an antibiotic for infection. Now, if instead of getting a pharmaceutical company to manufacture the enzyme, we could get the body to manufacture it, this would be even better. This is what gene editing does. It gets the body’s own DNA to produce the missing protein, phenyalanine hydroxlase. With this example, it is clear that consistency would demand that our ethical consideration of gene editing be analogous to the ethical assessment of other widely accepted medical interventions. There is no morally relevant difference between an enzyme being produced by a pharmaceutical company and the body itself producing that enzyme. Indeed, there are many advan- tages to not relying on pharmaceutical companies. Germline modifications are usually considered another matter, due to the fact that modifications are passed from one generation to another. Because editing embryos affects future people who do not have an op- portunity to consent to the serious risks currently associated with CRISPR, most countries have outlawed germline gene editing in humans (Cathomen et al., 2019, p. 121). Assuming it becomes safe, germline genetic modification through CRISPR could be considered either a way of enhancing future children, or as a medical tool to treat a disease they might otherwise develop: it could be viewed as a form of preventive medicine. Editing embryos to eliminate the genes involved in the emer- gence of cystic fibrosis, for example, would not be fundamentally differ- ent from the widely accepted smallpox vaccine. The difference between the vaccine and CRISPR would be that the edited genes would be passed along to future children as well. This makes gene editing more far- reaching than vaccination, but if edits are safe, there is no reason to object to cures to future generations just as we should not put slow release pollution in land fill or oceans that might cause disease in future genera- tions. Some worry that germ-line genetic interventions would transform the “gene pool of humanity” (Smith et al., 2012, p. 504). However, many current interventions, especially those related to reproductive issues, di- rectly affect the genetic heritage of humanity. Deciding to terminate or continue a in which the fetus has been diagnosed with a ge- netic disease, influences the genetic trajectory of humanity in a similar way to how a genetic intervention would influence it (Smith et al., 2012, p. 505). More generally, social norms and public policies can dramati- cally affect whether and when we have children, and how many children we have (Anomaly, 2014).

Ramon Llull Journal_11.indd 263 29/4/20 11:35 264 ramon llull journal of applied ethics 2020. ISSUE 11 PP. 259-276

Of course, as we mentioned above, the same technology that enables gene editing will allow us to undo or redirect possible errors (Smith et al., 2012, p. 505). But it is true that the heritability of germline modifica- tions brings a risk that any genetic errors or medical risks produced by edits will multiply when passed across generations, and that kinds of changes we make now will sculpt the kinds of people who will in turn make decisions about what kinds of people exist in the further future. Evolution is path dependent, and we can affect the direction and speed of evolution with the decisions we make now. The multiplication of mistakes is a danger, but it is necessary to balance that possibility with the also possible multiplication of the successes (Smith et al., 2012, p. 505). In the end, it is a cost-benefit calculation where the risks to future generations must be carefully calculated and included.

2.2. THE AMBIGUITY OF THE CONCEPTS OF NORMALITY AND HUMAN NATURE

According to a widespread misconception, natural selection is like a master engineer that tends to make us happy and healthy creatures. But this Panglossian view of evolution is false (Buchanan, 2011). Human DNA is riddled with the vestiges of viruses, and we constantly accumulate and pass along mutations to our children (Powell, 2015). Human nature is far from perfect, and we constantly try to improve it with interventions such as diet, education, vaccines, antibiotics, vitamins and other social interventions. Ritalin is prescribed to up to 10% of children with poor self-control to improve their educational prospects. Gene editing could be used as a part of public health care for egalitarian reasons: to benefit the worst off. The US Department of Education has estimated that nearly 50% of the US population lack the literacy to enjoy the rights and responsibilities of citizenship. This is largely social but also partly ge- netic. Gene editing could be a part of the solution to “cognitive upskilling” in the future. Moreover, as one of us (Julian Savulescu) has argued, “we are con- stantly modifying our genome unintentionally, by smoking, drinking, plane travel, sun exposure, exposure to viruses, even delayed parenting” (Savulescu, 2016). Developments such as the (control of) fire, the wheel, and the printing press have changed the human condition. It is true that genetic interventions operate directly in the human body, which seems

Ramon Llull Journal_11.indd 264 29/4/20 11:35 Alonso et al. 265 GENE EDITING: MEDICINE OR ENHANCEMENT?

to be a decisive change that makes it radically different from previous techniques. But if we understand that technique is a biological reality that is always in continuity with our body, the difference between “in- vasive” techniques and “non-invasive” techniques is blurred. The coun- terexample of glasses or hearing aids as commonly accepted bio-artifacts extends virtually to all types of technique. The , to take up one of the cases mentioned above, has substantially changed our habits, and with it our bodies: millions of back problems, obesity or myopia attest to this. For all these reasons, it could be said that the only differences between the new interventions and the changes that human beings have brought about in themselves over the centuries would be the speed and precision of these new forms of genetic modification (Smith et al., 2012, p. 492). These characteristics are not irrelevant. The fact that changes may hap- pen abruptly rather than gradually may be important in terms of our ethical appreciation of them and the response we are able to articulate. But these qualities in themselves do not seem to change the nature of genetic interventions, and perhaps they should make us take the precau- tion of moving slowly in order to have time to understand and react appropriately. This interpretation of CRISPR as one kind of medical procedure among others is supported by what we might call a historicist argument, which we have already implicitly been using. The point would be that, if we look back, it is possible to see that other technologies –now com- mon, but once novel– could have been considered “enhancers” in the past if we were to use the parameters used today to judge CRISPR. For example, the invention of footwear undoubtedly increased human resist- ance to walking long distances; the invention of cooking, as another ex- ample, transformed our digestive systems and also our brains (Herculano- Houzel, 2016). Not to mention all modern medicine, which has led to a spectacular increase in life expectancy, well above the average to which homo sapiens was accustomed for millennia. If all the aforementioned interventions and technologies were finally incorporated into our in a natural way and nobody claimed that their effects radically transform the “human nature”, it could be defended that CRISPR and gene editing in general will only need a period of normalization after which nobody will see it as “enhancing”.

Ramon Llull Journal_11.indd 265 29/4/20 11:35 266 ramon llull journal of applied ethics 2020. ISSUE 11 PP. 259-276

2.3. ANTI-GENE EDITING PREJUDICES IN LEGAL DOCUMENTS

The sharp differentiation between CRISPR and other medical inter- ventions often stems from a scientifically unjustified preconception that genetic modification is unnatural and immoral. This prejudice can be seen in different legislations and declarations of rights, such as article 10 of the UNESCO Declaration on the Genome and Human Rights (1997) or article 3 of the UNESCO Declaration on Bioethics and Human Rights (2005). These articles, while referring to respect for dignity, freedom and human rights in very general terms, seem to point to a certain defense of a supposed immutable human nature. This is partly due to a certain ten- dency, rooted in the human being, to react negatively to changes and fear them irrationally as a source of misfortune. However, an important re- sponsibility in the anti-genetic modification bias of these legislations has to do with the pressure of groups such as Greenpeace (Carey, 2019, pp. 44-45), which seem to have erroneously identified genetic modifica- tion with despoiling nature. One notable case happened in 2018, when the European Court of Justice ruled that genetic editing should be regulated by the same rules as transgenics (in which genes from other living beings are introduced in an organism) (Carey, 2019, p. 49). This, as Carey argues, seems a clear case of “regulatory inconsistency” (Carey, 2019, p. 58). One example of this regulatory inconsistency is the different treatment of sheep genetically edited to inhibit the myostatin gene (related to muscle growth) and the Texel variety sheep, which developed this inhibition through breeding techniques. Both sheep, the Texel variety and the genetically modified one, are identical –to the extent that if we had one next to the other they would be genetically indiscernible. However, according to the European regulation, one can be marketed while the other cannot. All of which has led to the even more fanciful proposal to edit an additional gene foreign to the genetically modified sheep in order to make it recognizable (Carey, 2019, p. 58-59). CRISPR has already raised many debates, especially in the US. In 2015, after some calls for a moratorium, Francis Collins, Director of the US National Institutes of Health, condemned the use of CRISPR to edit human embryos by stating that the agency would not fund that kind of controversial research. Later in 2015, an important gathering of institu- tions such as the US National Academy of Sciences and U.S. National Academy of Medicine, the UK Royal Society and the Chinese Academy

Ramon Llull Journal_11.indd 266 29/4/20 11:35 Alonso et al. 267 GENE EDITING: MEDICINE OR ENHANCEMENT?

of Sciences came to a more nuanced position, claiming that even if germline editing is still not ready for clinical use, it is also true that “as scientific knowledge advances and societal views evolve, the clinical use of germline editing should be revisited on a regular basis.” Continuous revisions and time to reflect on these problems is necessary. We should avoid falling into the “moral vertigo” Sandel (2007) and others have repeatedly pointed out as a danger. However, as Mathews and Lovell-Badge explain:

The advances in genome-editing technologies mean that long-standing ethical questions can no longer be dodged on the basis of obvious and agreed safety concerns. And although continued debate is crucial, it is time to collec- tively make decisions about the kind of world we want to live in and to de- velop policies to reflect that vision (Mathews and Lovell-Badge, 2015, p. 161).

Statements of this kind do not underestimate the importance of theo- retical reflection and discussion, far from it. But they do highlight the urgency of these problems, the need to try solutions and confront a real- ity that is already part of our world. “Gene editing for purposes of medical therapy, human enhancement, engineering of future children, and even creating a , confront our society with the inescapable necessity of making moral choices” (Peters, 2019a, p. 79). And as Smith, Chan and Harris make clear, “whereas these decisions may be made for better or worse, we if anything have a duty to make them for better, but we cannot refrain from making them” (Smith et al., 2012, p. 504). Paralysis and inaction are not morally neutral, but, in some ways, the worst response to such pressing and unavoidable problems.

2.4. STATE OF THE ART AND SAFETY CONCERNS

We’ve argued that there is no clear or morally relevant distinction between using CRISPR to alter ourselves and our children, and other medical interventions that have similar effects when the goal is treating or preventing disease. This is therapeutic gene editing. Many of the char- acteristics attributed to CRISPR are characteristics equally present in other medical interventions considered therapeutic; in most cases, only a difference of degree can be found. Complex diseases involving several genes are still very difficult to treat, and our biological knowledge of how these genetic interactions operate is still limited. But it is quite likely that

Ramon Llull Journal_11.indd 267 29/4/20 11:35 268 ramon llull journal of applied ethics 2020. ISSUE 11 PP. 259-276

technologies like CRISPR will soon be able to treat monogenetic dis- eases, such as Huntington’s disease or the Lesch-Nyhan syndrome, for which there have already been relatively successful preliminary studies (Carey, 2019, p. 103-104). These are very encouraging prospects for CRISPR. However, we should also recognize some real problems that CRISPR technology cur- rently brings with it. The main risks are “off-target effects, chimerism, unanticipated epigenetic factors, and unintended long-range consequenc- es of even on-target alterations” (Gouw, 2018, 496-497). In particular, as Cathomen explains, “one of the major concerns is the risk of off-target activity, when gene editing occurs at unintended sites, so-called off target sites” (Cathomen et al., 2019, p. 121). The experiment carried out by the Chinese scientist He Jiankui that gave birth to two genetically modified girls is a clear example of an irresponsible use of gene editing technology. But safety concerns by themselves do not distinguish gene editing from other types of medicine. All medicine involves risk. CRIS- PR is simply much riskier than almost any known medicine at this mo- ment in time, though obviously chemo and radiotherapy induce mutations in the genome capable of causing secondary cancers. Surgery can kill a patient. Gene editing may be morally dubious to use in part because imposing big risks on future people is less warranted than parents consent- ing to risky medicine that merely affects themselves, such as chemo- therapy or an experimental surgery. But the kinds of dilemmas presented by therapeutic gene editing are no different in kind from other aggressive and risky forms of medicine. Many innovative medical procedures begin as dangerous, but agencies can establish measures that allow us to diminish these dangers. At present, gene editing should only be used for research, so that the technique can be refined. In fact, allowing gene editing research has fostered not only improvements in the accuracy of CRISPR, but the recent development of alternatives to CRISPR like “prime editing,” which appears to be more accurate than CRISPR. And when we start using it to cure dis- eases in embryos, we should choose to first use it in a disease that is otherwise lethal early in life and where there is no treatment. Severe OTC deficiency or Tay Sach’s Disease, for example, would be a good candidate for these first uses on embryos (Savulescu, 2001; Savulescu and Singer, 2019). Even if CRISPR is never used to edit embryos, it is very difficult to deny its contributions to medicine in a general . Gene-editing in the

Ramon Llull Journal_11.indd 268 29/4/20 11:35 Alonso et al. 269 GENE EDITING: MEDICINE OR ENHANCEMENT?

lab is already being used to gain greater understanding of diseases, and new treatments are being developed because of insights gained from ap- plications of CRISPR in the lab. For example, gene-edited embryos that are not used for human reproduction are currently used to study human development and the origin of disease. They can be used to create embry- onic lines that themselves contain gene-edits that cause or protect against disease to study the way disease occurs. And they can be used to create stem cells with edited genes which could be used to treat disease.

3. SHOULD GENE EDITING SUCH AS CRISPR BE CONSIDERED A FORM OF ENHANCEMENT?

Those who believe that gene editing is a step beyond traditional medicine would place CRISPR within what has been called human en- hancement. Several authors consider that we have an obligation to enhance ourselves, and our children, if the means to doing so are safe (Savulescu and Kahane, 2011). The thesis that would summarize this understanding of CRISPR as an enhancement is the following: CRISPR genetic editing technology constitutes an intervention that enhances and takes some hu- man capabilities beyond their normal parameters. This would mean that CRISPR would leave the medical paradigm, or at least the therapeutic paradigm. As we have argued, gene editing can be used for purely thera- peutic purposes. For many, nonetheless, this seems a very clear and in- tuitive next step: the idea that changing our genes means radically chang- ing ourselves; and doing so in a way that is incomparable to other bio- medical interventions. However, we must bear in mind, as we have previously warned, that these intuitions are often not based on solid and informed reasons (Juth, 2016, p. 423), but on a “genetic vulgate”, a confused perspective based primarily on prejudices that are the product of innumerable works of fiction that greatly simplify the reality of ge- netic interventions and, in general, the functioning of the genome in the human being. And laws and regulations can permit gene editing for therapeutic reasons while banning it for enhancement purposes, if this distinction is deemed to be morally relevant. It is true that gene editing can be used for enhancement purposes. Multiple edits of genes could be used to enhance or moral dispositions such as altruism or empathy. Gene editing could be used for physical, cognitive or (Savulescu et al., 2011).

Ramon Llull Journal_11.indd 269 29/4/20 11:35 270 ramon llull journal of applied ethics 2020. ISSUE 11 PP. 259-276

But just as plastic surgery can be used to reconstruct the appearance after horrendous burns or injuries, it can also be used for purely cos- metic enhancement purposes. It is possible to separate surgical and gene editing into therapy or enhancement.

3.1. SOCIETAL-LEVEL CONCERNS

As we have seen, it is difficult to conclude that CRISPR is fundamen- tally different from current medical procedures. But some worry less about the safety of individual patients and more about the social conse- quences of CRISPR being used. One worry is that if germline interven- tions were to become commonplace, a substantially different human nature would emerge. The human species, homo sapiens, would no longer have, as happens with other species, a set of relatively stable char- acteristics. These traits could vary significantly from one era to another or from one individual to another. And, what could be even more mor- ally relevant, this variability among humans would be a product of choice (from individuals or from the State). Other authors have already written plausible replies to these objections (Buchanan, 2009), so we will not tackle this problem here. Arguments of this kind usually raise a related objection: the idea that gene editing could create a different breed of humans, maybe even creat- ing a different being, the transhuman (Savulescu, 2005; Bostrom, 2005; Harris, 2010). However, we must be able to distinguish different ge- netic interventions and their degree of influence. Modifications in iso- lated genes, such as those involved in monogenic diseases, will hardly bring about any substantial change. Altering entire chromosomes, such as the elimination of the extra chromosome 21 to avoid the birth of a human with Down syndrome, could involve a deeper transformation (Juth, 2016, p. 423). The concrete aspect modified is also relevant, inde- pendently of it being enhancement or therapy. For example, cognitive therapy of a person with Down syndrome by excision of the extra Chro- mosome 21 could be seen to be identity affecting on a narrative or psy- chological account of personal identity. It would thus end the person’s life, replacing them with a more cognitively advanced but different person. Although therapeutic, this would raise significant ethical issues. Whether it is therapy or enhancement does not by itself settle its permissibility or impermissibility.

Ramon Llull Journal_11.indd 270 29/4/20 11:35 Alonso et al. 271 GENE EDITING: MEDICINE OR ENHANCEMENT?

Again, a detailed, case-by-case study is essential to address this complex problem. The point for our discussion is that using gene editing techniques like CRISPR is not necessarily a form of enhancement. Ethical considerations do appear when we imagine the creation of enhanced humans exacerbating existing inequalities, worsening the condi- tions of a good part of the population. But this applies equally or more so to therapeutic gene editing or conventional medicine. They arguably provide greater welfare benefits than enhancements. If CRISPR is only accessible to a few, if access to this technology is not guaranteed to the entire population, the consequences could be the creation of a new elite that is not only economically more powerful, but also biologically superior. This is, again, a legitimate concern, but not one that can automatically and by itself interrupt CRISPR’s implementation. We must, of course, be wary of this possibility and potentially take legal and political steps to prevent it (Monast, 2018). However, more impor- tantly, we must acknowledge that nature does not care about fairness. Some are born gifted and talented, others with short painful lives or severe disabilities. The objection to CRISPR contributing to the creation of a genetic masterclass should then be reversed. It could be argued that natu- ral genetic differences are the ones that are creating and maintaining a current –not future or possible- genetic masterclass. CRISPR would be the tool to break the existing genetic class differentiation. From this point of view, CRISPR would be a tool of social therapy, not enhancement. The core of these societal-level problems relies on what is usually called “collective action problems”, situations in which the uncoordinated choices of individuals can produce aggregate harms (Gyngell and Douglas 2015, Anomaly, Gyngell and Savulescu 2019, Anomaly 2020). These are among the most complicated problems philosophers and economists face, but they are not unsolvable. For example, many countries have met challenges associated with reducing global air and water pollution, even when each country (and each citizen) has some incentive to ignore the collective costs associated with their behavior. The point for our current discussion is that this social phenomenon is not entirely new, nor re- stricted to enhancements. As we mentioned before, humanity has already experienced some drastic changes through history, changes that have modified its biological constitution. Inventions such as the wheel, writing or more recently internet, have had very significant consequences on a biological and social level. All the consequences of these technological developments have not been beneficial; measures had to be taken to avoid

Ramon Llull Journal_11.indd 271 29/4/20 11:35 272 ramon llull journal of applied ethics 2020. ISSUE 11 PP. 259-276

or at least diminish a number of harmful consequences. They also were not distributed in a fair way right from the start. But preventing some people from accessing transformative technologies by over-regulating them can inadvertently lock in current inequalities, and prevent the worst off from improving their lot.

4. CONCLUSIONS

CRISPR gene editing technology is already a reality that we must face ethically and philosophically. Understanding its status and functioning, as well as comparing it to other medical procedures, has allowed us to dispel some myths about it. As we have argued, CRISPR can be both an innovative medical procedure and a potential enhancer. It is possible that CRISPR will eventually be used as a tool for enhancement, but this looks unlikely in the near future. Moreover, if the therapy/enhancement dis- tinction is deemed important, we can legalise therapeutic gene editing while banning gene editing for enhancement. We need to be wary of its early development, its safety concerns and some possible consequences of its implementation in society. But none of these issues should prevent us from allowing its responsible introduction in medical practice. And, as we have argued, therapeutic as well as enhancement gene editing raise important ethical issues (for example around identity) which warrant address. With revolutions of this kind, we inevitably need to have a discussion that reaches a broad consensus on the matter. As Peters argues, “engaging in moral deliberation toward setting policy on the genetic future of the human race is, like ecology, a planetary concern” (Peters, 2019b, p. 11). Therefore, he proposes to create the conditions for a “single planetary community of moral deliberation” (Peters, 2019b, p. 11). One attempt to translate this global discussion into reality is the proposal for the crea- tion of a “global observatory for gene editing” (Jasanoff and Hurlbut, 2018). This observatory, these authors argue, should be international and interdisciplinary, including not only the scientific community but also scholars from different areas and political and social agents of all kinds. Initiatives of this kind seem a step in the right direction. With this paper we aim to allow for a better, more informed discus- sion. We should reject prejudice against gene editing in favor of sound scientific information and fine grained ethical analysis. It is not a question

Ramon Llull Journal_11.indd 272 29/4/20 11:35 Alonso et al. 273 GENE EDITING: MEDICINE OR ENHANCEMENT?

of whether or not we should edit genes. It is a question of what kinds of edits, in what circumstances, against the background of specific kinds of regulations. We need a mature ethics that enables us to use powerful sci- ence such as gene editing, while also preventing abuse. What we do not need is more unwarranted nightmares of doom that unjustifiably prevent many people from benefiting of great improvements in their health. Cau- tion is necessary. But we need to be cautious about two possible mistakes: being too permissive with a technology that ends up being harmful, and being excessively reticent with a technology that could bring so many benefits.

REFERENCES

Anomaly, J. (2014). ‘Public Goods and Procreation.’ Monash Bioethics Review 32: 172-188. Anomaly, J. (2020). Creating Future People. The Ethics of Genetic Enhancement. Routledge. Anomaly, J., Gyngell, Ch., & Savulescu, J. (2019). ‘Great Minds Think Different: Preserving Cognitive Diversity in an Age of Gene Editing.’ Bioethics. https://onlinelibrary.wiley.com/doi/pdf/10.1111/ bioe.12585 Bostrom, N. (2005). ‘A history of transhumanist thought.’ Journal of Evolution and Technology, 14, Journal of Evolution and Technology, 2005, Vol.14(1). Brokowski, C., & Adli, M. (2019). ‘CRISPR Ethics: Moral Considera- tions for Applications of a Powerful Tool.’ Journal of Molecular . 431, 88-101. Buchanan, A. (2009). ‘Human nature and human enhancement.’ Bioethics 23(3): 141-150. Buchanan, A. 2011. Better than Human? Oxford University Press. Buchanan, I. (2018). A Dictionary of Critical Theory. Oxford Univer- sity Press. Carey, N. (2019). Hacking the Code of Life: How gene editing will rewrite our futures. Icon Books. Cathomen, Toni, Schüle, S., Schüßler-Lenz, M., & Abou-El-Enein, M. (2019). ‘The Human Race: Loosening Regulatory Standards for Commercial Advantage?’ Trends in Biotechnology, February, Vol. 37, No. 2.

Ramon Llull Journal_11.indd 273 29/4/20 11:35 274 ramon llull journal of applied ethics 2020. ISSUE 11 PP. 259-276

Daniels, N. (2000). ‘Normal Functioning and the Treatment-Enhance- ment Distinction.’ Cambridge Quarterly of Healthcare Ethics, 9 (3.) Gouw, Arwin, M. (2018). ‘“Challenging the Therapy/Enhancement distinction in CRISPR Gene Editing.’” In The Palgrave Handbook of and Public Policy, edited by David Boonin, 493-508. New York, NY: Palgrave Macmillan. Guttinger, Stephan. (2018). ‘Trust in Science: CRISPR–Cas9 and the Ban on Human Germline Editing.’ Science and Engineering Ethics. Volume 24, Issue 4, pp. 1077-1096. Habermas, J. (2003). The future of human nature. Cambridge: Polity. Harris, J. (2010). Enhancing evolution: the ethical case for making bet- ter people. Woodstock: Princeton University Press. Hauskeller, C. (2004). ‘Genes, genomes and identity. Projections on matter.’ New Genetics and Society, 23:3, 285-299, DOI: 10.1080/1463677042000305057. Herculano-Houzel, S. (2016). The human advantage: A new under- standing of how our brain became remarkable (University Press Scholarship Online). Cambridge, Massachusetts. Jasanoff, S., & Hurlbut, B. (2018). ‘A global observatory for gene edit- ing.’ Nature 555, 435-437. Juth, N. (2016). ‘Germline genetic modification, CRSIPR, and human identity: Can genetics turn you into someone else?’ Ethics, Medicine and Public Health. 416-425. http://dx.doi.org/10.1016/j.je- mep.2016.05.003. Mathews, Debra, J. H., & Lovell-Badge, Robin. (2015). ‘A path through the thicket.’ Nature, Vol 527, 159-161. Monast, Jonas J. (2018). ‘Editing nature: reconceptualising biotechnol- ogy governance.’ Boston College Law Review, Vol. 59, 2377-2436. Nordgren, A. (2008). ‘Genetics and Identity.’ Community Genet, 252- 266. DOI: 10.1159/000121396. Nordgren, A., & Juengst, E. T. (2009). ‘Can genomics tell me who I am? Essentialistic rhetoric in direct-to-consumer DNA testing.’ New Genetics and Society, 28:2, 157-172, DOI: 10.1080/ 14636770902901595. Peters, T. (2019a). ‘Flashing the Yellow Traffic Light: Choices Forced Upon Us by Gene Editing Technologies.’ Theology and Science, 17:1, 79-89, DOI: 10.1080/14746700.2019.1557807. Peters, T. (2019b). ‘Are we closer to free Market ? The CRISPR controversy.’ Zygon, Vol. 54, no. 1 (March). 7-13.

Ramon Llull Journal_11.indd 274 29/4/20 11:35 Alonso et al. 275 GENE EDITING: MEDICINE OR ENHANCEMENT?

Pinker, S. (2019). Enlightenment now: The case for reason, science, humanism and . UK: Penguin. Powell, R. (2015). ‘In genes we trust: germline , eu- genics, and the future of the human genome.’ Journal of Medicine and Philosophy 40: 669-695. Resnik, D. (2000). ‘The moral significance of the therapy/enhancement distinction in human genetics.’ Cambridge quarterly of health care 9: 365-377. Sandel, M. (2007). The case against perfection: Ethics in the age of genetic engineering. Cambridge, Massachusetts. Savulescu, J. (2001). ‘Harm, ethics committees and the gene therapy death.’ Journal of Medical Ethics 2001;27. 148-150. Savulescu, J. (2005). ‘New breeds of humans: The moral obligation to enhance.’ Reproductive BioMedicine Online, 10, 36-39. Savulescu, J. (2016). ‘Why we should fine-tune the DNA of future gen- erations.’ Cosmos (https://cosmosmagazine.com/biology/build- your-own-baby). Savulescu, J., & Guy Kahane (2009). ‘The Moral Obligation to Produce Children with the Best Chance of the Best Life.’ Bioethics 23(5): 274-290. Savulescu, J., Meulen, R. ter, & Kahane, G. (2011). Enhancing human capacities (Ebook central). Chichester, West Sussex, England. Savulescu, J., & Singer, P. (2019). ‘An ethical pathway for gene edit- ing.’ Bioethics, 33(2), 221-222. Sloterdijk, P. (2009). Rules for the Human Zoo: A Response to the Let- ter on Humanism. Environment and Planning D: Society and Space, 27(1), 12-28. Smith, K. R., Chan, S., & Harris, J. (2012). ‘Human Germline Ge- netic Modification: Scientific and Bioethical Perspectives.’ Archives of Medical Research 43, 491-513. Sparrow, R. (2011). ‘A Not-So-: Harris and Savulescu on Human Enhancement.’ The Hastings Center Report, Vol. 41, No. 1 (January-February 2011), 32-42. Stable URL: http://www.jstor. org/stable/41058988 Marcos Alonso Adolfo Ibáñez University [email protected]

Ramon Llull Journal_11.indd 275 29/4/20 11:35 276 ramon llull journal of applied ethics 2020. ISSUE 11 PP. 259-276

Jonathan Anomaly University of Pennsylvania [email protected] Julian Savulescu Director, Oxford Uehiro Centre for Practical Ethics. Co-Director, Wellcome Centre for Ethics and Humanities University of Oxford. Visiting Professorial Fellow, Murdoch Children’s Research Institute Submission: December, 13th 2019 Acceptance: December, 13th 2019

Ramon Llull Journal_11.indd 276 29/4/20 11:35