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Gene Editing: Medicine Or Enhancement?

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Gene Editing: Medicine Or Enhancement? 1 GENE EDITING: MEDICINE OR ENHANCEMENT? Marcos Alonso, Jonathan Anomaly and Julian Savulescu Abstract: In this paper we will discuss the status of gene editing tech- nologies like CRISPR. We will examine whether this technology 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 human health 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 cloning debate, it is possible to sort out therapeutic gene editing from enhancement gene editing in considering regulation or policy. Keywords: Gene editing, enhancement, CRISPR, biotechnology, bioethics. 1. INTRODUCTION “Genetic modification is no longer science fiction” (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 technologies like CRISPR have been used in labs Ramon Llull Journal_11.indd 259 29/4/20 11:35 260 RAMON LLULL JOURNAL OF APPLIED ETHICS 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 humans, 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 genetics 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 gene therapy does not involve changes that pass from generation to generation, so its influence on the human body 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 life 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.
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