The platforming of human embryo editing: prospecting “disease free” futures

Abstract

In November 2018, a scientific scandal broke when news emerged that the world’s first gene edited babies had been born in China on the eve of the 2nd International Summit on Human Genome Editing in Hong Kong. He Jiankui had recruited a total of seven couples who were in need of fertility treatment to participate in an effort to clinically apply human embryo editing with the promise that, if successful, their future children would be protected from HIV. While He Jiankui has since been jailed for illegal medical practice and much has been written about his unethical and flawed “experiment,” in this article we suggest that the Hong Kong summit nevertheless marked the moment when human embryo editing came to be platformed. Human embryo editing brings together a complete set of new reproductive and genetic technologies into a total bio-reproductive platform shaped by socio-technical “disease free” imaginaries.

Keywords:

• gene editing
• selective reproduction
• biomedical platforms
• bioethics

Introduction

Chinese scientist He Jiankui announced that he had produced the first gene-edited human babies on November 27, 2018, shocking an audience of experts attending his presentation at the 2nd International Summit on Human Genome Editing who had gathered in Hong Kong to consider the scientific, ethical, legal, and social implications of this emerging field. Since that fateful day, thousands of social media posts and news articles have been devoted to condemning and explaining why, whether and how it was possible for He Jiankui to (attempt to) disable the CCR5 genes in the embryos that would eventually be born as the twins “Lulu” and “Nana.” Their father, who was HIV positive, and mother had been recruited by He through an AIDS advocacy group to participate in a research project that offered them the potential of “disease-free” children (Cohen 2019). The couple received fertility treatment involving gamete retrieval, in vitro fertilization through intracytoplasmic sperm injection together with CRISPR embryo editing, preimplantation whole genome sequencing of the resulting embryos, implantation of two edited embryos, and gestation with non-invasive prenatal testing. As explained by He in a scientific paper that has yet to be published, “we used CRISPR-Cas9 to reproduce a prevalent genetic variant of the CCR5 gene in fertilized oocytes during [an] in vitro fertilization procedure, with the aim of helping the twins to be born with their own natural protection against HIV infection” (cited in Regalado 2019b).

Immediately after the story broke, a group of 122 biomedical scientists in China signed a letter calling He’s experiment “crazy” while deploring what they saw as a “huge blow to the global reputation and development of Chinese science, especially in the field of biomedical research” (Luo 2018). The Ministry of Science and Technology in China quickly announced that He would be placed under house arrest and ordered all research institutes to suspend any research projects led by him reminding everyone that “China has banned reproductive use of gene editing in human embryos. The experiment has violated laws and regulations in China” (cited in Cheung and Shen 2018). Shocked by He Jiankui’s upstaging of their carefully planned conference, the Organizing Committee of the International Summit on Human Genome Editing likewise issued a statement at the close of their summit on the 29th of November 2018 in which they condemned He’s work as “deeply disturbing” and “irresponsible” since its “flaws include an inadequate medical indication, a poorly designed study protocol, a failure to meet ethical standards for protecting the welfare of research subjects, and a lack of transparency in the development, review, and conduct of the clinical procedures” (Baltimore et al. 2018).

As the immediate scandal settled, investigations were set in motion by the Ministry of Science and Technology in China as well as at Stanford University (where He had been a postdoctoral researcher in 2011), the latter pledging to find out “what several high-profile faculty members knew about a Chinese effort to create gene-edited babies led by a onetime researcher at the California school, He Jiankui” (cited in Regalado 2019a). Commentators pointed out that this was not just a story about one rogue scientist, questioning why top international scientific journals had not raised red flags after receiving earlier paper submissions from He and his team of researchers that detailed their human embryo editing experiment. Scholars also pointed out that He had received support from Chinese state-sponsored science talent programs such as the Qianren Jihua (Thousand Talents Plan), which explicitly pushed junior scholars to “break new ground.” Indeed, as medical ethicist Jing-Bao Nie has discussed, He boldly claimed in a brief protocol submitted for approval to the Ethics Committee at the Shenzhen Women and Children’s Hospital that “this creative research will be more significant than the IVF technique which won the 2010 Noble Prize, and bring about the dawn of the cure for numberless severe genetic diseases” (Nie 2018). Some of China’s most prominent bioethicists led by Zhai Xiaomei and Qiu Renzong argued that this was not a uniquely Chinese problem, challenging foreign critics who “consider[ed] Dr. He’s wrongdoings as evidence of a ‘Wild East’ in scientific ethics or bioethics … In the era of globalization, rule-breaking is not limited to the East … In our opinion, we should reflect on the prevailing international science culture that puts premium on sensational research and being first” (Zhai et al. 2019).

These Chinese bioethicists also blamed the collusion of academic and business interests in scientific research practices, which had led to policies that “encourage[d] scientists at universities to run businesses and share part of the profits with the universities without sufficient oversight” (Zhai et al. 2019).

Clearly then, answers to the questions of why and how He’s “world’s first” was possible are more complex than “Frankenstein scientist” (Lo 2019) news headlines would have it. In this article, we change tack, away from the specificities of the ways in which He Jiankui was able to set up an “ethically approved” and scientifically funded clinical operation in Shenzhen that eventually allowed for the birth of Lulu and Nana, and towards the more general question of how human embryo editing became possible in 2018. For, when it comes to the science behind He’s operation (however imperfectly he in fact performed embryo editing), to understand the conditions of possibility of now-realized human embryo editing, we must locate He and his team within those technoscientific assemblages that continue to form around selective reproductive technologies (SRTs) which are “used to prevent or allow the birth of certain kinds of children” (Gammeltoft and Wahlberg 2014, 201).

We begin the article with an ethnographic account of He Jiankui’s now infamous November 2018 presentation of his paper “Birth of Twins After Genome Editing for HIV Resistance” at the 2nd International Summit on Human Genome Editing in Hong Kong, where one of the authors (Wahlberg) chaired a session on “Global Perspectives: Somatic and Germline Therapy, Prevention, and Enhancement Applications.” We then go on to argue that He Jiankui’s presentation marked the moment when human embryo editing was – however prematurely – platformed. For Peter Keating and Alberto Cambrosio, a biomedical platform “is less a thing than a way of arranging things in both a material and a discursive sense. In both senses (as an instrument or a project), the platform is the basis for the organization of activities” (Keating and Cambrosio 2000, 27). Empirically analysing the processes and procedures that allow for cancer diagnosis using immunophenotyping, they show how biomedical platforms are what enable the “constitution and circulation of protocols, instruments, and substances between laboratories and the establishment of conventions that allow them to be used” (Keating and Cambrosio 2003, 3). But, there is more to platforming than this. Building on Keating & Cambrosio’s work, in her book Biological Relatives, Sarah Franklin (2013, 22) argues that, through the past four decades, IVF (in vitro fertilization) has “transformed from ‘a bridge to new life’ into … a platform, a stage, and a launch pad by means of a translational imaginary that was animated by the prospect of future kinships not only between parent and child, but between technology and offspring.” Hence, biomedical platforms also provide a stage from which to propel technoscientific visions of possible futures.

While obviously not globally routinized in the way that IVF and other reproductive technologies like sperm banking and prenatal testing have become (see Bharadwaj 2016; Wahlberg 2018; Zhu and Dong 2018), human embryo editing has emerged as what might be thought of as a total bio-reproductive platform bringing together, as we will see, the techniques of “carrier” testing, IVF/ICSI, CRISPR/Cas9-gRNA, PGD, NIPT and cord blood banking with the objective of selectively editing and then implanting human embryos with the aim of avoiding disease. Moreover, even if we are likely a long way from the routinized use of human embryo editing globally, the Hong Kong summit nevertheless ended up providing human embryo editing with a platform, which is to say a media-frenzied global stage, even if for the wrong reasons. Finally, we show how the parceling out of the reproductive process into ever more specialized moments of sequencing, editing, sorting, selecting, diagnosing, discarding and terminating is driven by a socio-technical imaginary (Jasanoff and Kim 2013) captured in He’s grand prediction of “the dawn of the cure for numberless severe genetic diseases.”

Methods

The paper is based on an assemblage ethnography approach that takes as its object the modes of problematisation within which human embryo editing has emerged as both a possible solution to “severe genetic disease” and a social and ethical quandary debated by scientists, bioethicists, lawmakers and media commentators alike. The object of an assemblage ethnography is not so much the lived experiences, for example of those infertile couples who were recruited into He Jiankui’s project, rather it is the configurations that coalesce around and thereby shape particular “social problems” such as “over population,” “poverty,” “crime,” “migration,” “infertility” or “disease” (Wahlberg 2018, 2021). The authors of this paper are uniquely qualified to analyze these processes of problematisation around human embryo editing. Over the past two decades, we have carried out extensive ethnographic research on biomedical technologies in China, including the uses of prenatal genetic testing (Zhu 2014; Zhu and Dong 2018), the proliferation of stem and fetal cell therapies (Song 2017), and the routinization of reproductive technologies (Wahlberg 2018). On the basis of his work on selective reproduction, Ayo Wahlberg was invited to chair a session at the Hong Kong Human Genome Editing summit where the objective was to debate the permissibility of human embryo editing. Two of the authors (Dong and Song) attended the Hong Kong Summit in person as audience members and another author (Zhu) tracked the reactions live from mainland China. As such, building on our long-term fieldwork in the area of reproductive medicine and science in China and our attendance at the Hong Kong Summit, we have followed and documented the immediate responses and reactions in the aftermath of the revelation of the birth of Lulu and Nana first-hand (see also Kirksey 2020). Furthermore, we have collected the legal and policy responses that followed in China and internationally as well as hundreds of scientific articles, commentaries and media reports. It is this collection of long-term ethnographies in various repro-medical settings in China, ethnographic notes from the Hong Kong Summit, policy documents, position briefs, media articles and more that allows us to describe and analyse what we have called the platforming of human embryo editing – both in terms of the international technoscientific assemblage that has made it possible and the media spectacle that confirmed its realization on the global biomedical scene. Research for this article has taken place according to the ethical requirements for qualitative research of the University of Copenhagen governed by Danish law (no. 593, AI003842). Dr. He Jiankui’s presentation at the Hong Kong summit was covered by mass media from all over the world and is publicly available on multiple online platforms. All documents and online sources that we have collected are likewise publicly available. As part of an on-going ethnographic study on rare diseases in China, Dong and Zhu have been participating in a WeChat group focused on such conditions upon invitation from the group administrator.

A scandal breaks

A few weeks prior to the 2nd International Summit on Human Genome Editing, the organizers sent all of the presenters and session moderators a request for “help in promoting the summit through social media or other channels such as newsletters, listservs, etc … Please use the hashtag #GeneEditSummit for social media posts.”¹ Little did we know that Summit organizers would not need any help at all with publicity. Together with the rest of the world, Summit participants found out on Monday 26th of November in 2018 through breaking news that the world’s first genetically edited babies, called Lulu and Nana, had apparently been born with their CCR5 genes disabled as a protective measure against HIV. As Ryan Ferrell, a publicist from the HDMZ science and healthcare marketing agency that He had hired, would later recount, they had been “forced” to go public as, in the evening of the 25th of November 2018, MIT Technology Review reporter Antonio Regalado reported that a project detailing human embryo editing had been uploaded to an official Chinese clinical trial registry (Regalado 2018a). By the morning of the 26th of November, the story had become headline news globally, in Ferrell’s words, “this was everything not to plan” (in Cohen 2019).

The shock was all the more palpable since the Summit had been convened with the express goal of debating and discussing whether human trials with embryo editing should proceed given the current stage of scientific development, not least since many open safety questions concerning unpredictable “off-target” effects, “on-target” complexities, mosaicism as well as challenges around efficiency, specificity and fidelity remained. While He claimed that the news had been leaked before he could publish in a peer-reviewed scientific journal, the story broke through what nevertheless looked like an orchestrated public relations campaign. The “leaked” news reports were accompanied by an exclusive Associated Press interview with He featured as the lead scientist, a slick YouTube justification video (“If I didn’t do this, someone else would”), and an open-access article published in the CRISPR journal entitled “Draft Ethical Principles for Therapeutic Assisted Reproductive Technologies” which He had co-authored with others including Ferrell (He et al. 2018).

Before the story broke, He Jiankui was already on the summit program for a scheduled panel on Human Embryo Editing as an invited speaker from the Southern University of Science and Technology in Shenzhen. Yet, so massive were the fallout and outcries in the following day that Summit participants and hundreds of newly accredited media delegates did not quite know whether he would in fact show up for his session. Show up he did, ushered in by an audible gasp from an incredulous audience as he strode across the stage of the Grand Hall at the University of Hong Kong on Wednesday 28th of November 2018. It was an awkward moment, with so much unknown at that point and the scientist at the center of the maelstrom bathed in the frenzied strobe flashes from hundreds of clattering cameras. He began by apologizing that news of Lulu and Nana had been “leaked” before the scientific community had had a chance to scrutinize his work, noting that the paper detailing the embryo editing, implantation and birth of the twin girls was still in review. He then proceeded to give a highly polished presentation of that very paper to a captivated audience.

As Sandra González Santos and colleagues have argued in their analysis of news coverage surrounding the birth of the first “three-parent baby” in Mexico in 2016 under the direction of John Zhang from the New Hope Fertility Center in New York, “first press reactions constitute an exceptional performative moment of peak media visibility and a thickening of meaning” (González Santos, Stephens, and Dimond 2018, 437). In the 2016 case, these reactions “granted visibility to specific narratives about saving lives and the rightness of the family, while obscuring others such as the complicated ethical history of the technique, and the role of the mitochondrial donor in the process and politics of the conception” (González Santos, Stephens, and Dimond 2018, 437). In their ethnography of pre-implantation genetic diagnosis in the United Kingdom, Sarah Franklin and Celia Roberts have in a similar way shown how media reporting juxtaposed critiques of a new era of “designer babies” with family stories focused on “a new technique to help couples have healthy children” (Franklin and Roberts 2006, 67). Interestingly, He Jiankui had met with John Zhang in August of 2018 to discuss the possibility of opening a clinic together in China for “genetic medical tourism” (Cohen 2019). Perhaps thinking that he too could shape the narrative in terms of “saving lives,” He had, as already noted, employed Ryan Ferrell from the HDMZ marketing agency to orchestrate a media strategy. In his YouTube interview, He explains, “I understand my work will be controversial, but I believe families need this technology.” These nascent PR efforts collided with the massive media storm that was brewing around him in Hong Kong.

Following a tense question-and-answer session after his presentation, which focused on informed consent procedures, ethical approval as well as the quality of the science, He was ushered out of the auditorium’s side door and not seen again in public. Rumours circulated that he had been arrested. Hundreds of reporters rushed around seeking comments from Summit organizers and indeed any conference participant who was willing to comment. Wahlberg was bombarded by media requests from his home country in Denmark, leading to live radio and television interviews from his hotel room in Hong Kong. As the “sensational” news of the world’s first gene-edited human babies reverberated around the globe, the headlines coalesced in unanimous agreement: He Jiankui’s experiment was “outrageous,” “irresponsible” and “unethical” (see Lo 2019). Only a few voices called for a more “balanced” reaction, suggesting that the time may indeed be right for human trials: “At some point, we have to say we’ve done hundreds of animal studies and we’ve done quite a few human embryo studies” (George Church in Cohen 2018).

So much has been written and said about He Jiankui’s human embryo editing work in the days, months and years since the now discredited scientist presented it at the Hong Kong Summit on Human Genome Editing we attended. On newspaper front pages, breaking news television, online blogs, radio broadcasts, Weibo, WeChat, and the Twittersphere, He has been condemned for moving from bench to bedside much too prematurely, accused of violating China’s laws and regulations, reproached for insufficient ethical review of his work, criticized for problematic recruitment and consent practices, reproved for carrying out his research in stealth, censured for not having targeted an “unmet medical need,” critiqued for having carried out flawed gene editing and questioned about his finances. His actions have had a direct effect on the lives of the seven couples who participated in his clinical application of human embryo editing, not least Lulu, Nana and their parents as well as a second confirmed pregnancy and birth. Consequently, far from self-imagined “glory,” He ended up in the courts of Shenzhen where, two years after his presentation in Hong Kong, he was sentenced to three years in prison for “illegal medical practice” in January 2020. Despite his coordinated ethics paper, YouTube interviews and media campaign, He’s efforts to become first in the world backfired as the Chinese and international scientific community roundly turned on him. However, as we will demonstrate, this repudiation by the scientific community was not because he had pursued embryo gene editing as such, but because he had proceeded to human trials “prematurely” and without sufficient medical justification. Nevertheless, without question, by the end of the Hong Kong summit, human embryo editing had bombastically arrived center stage, surrounded by the world’s microphones and cameras.

The Dawn of human embryo editing?

Notwithstanding the scandal that played out in Hong Kong and beyond, we argue that the Second International Summit on Human Genome Editing may well come to be remembered as the moment where human embryo editing was platformed, not only due to the media attention described above, but also biomedically so. In his plenary address at the Summit, Dean of Harvard Medical School George Daley recounted how rapidly the conclusions of influential committee reports on Human Genome Editing had evolved towards clinical application in the preceding years. The closing statement of the first International Summit on Human Genome Editing held in 2015 had underlined that “it would be irresponsible to proceed with any clinical use of germline editing unless and until (i) the relevant safety and efficacy issues have been resolved, based on appropriate understanding and balancing of risks, potential benefits, and alternatives, and (ii) there is broad societal consensus about the appropriateness of the proposed application” (Baltimore et al. 2015). This was closely followed by a May 2016 report from the International Society for Stem Cell Research which stated that “any attempt to modify the nuclear genome of human embryos for the purpose of human reproduction is premature and should be prohibited at this time” (ISSCR 2016). However, following subsequent advances in the science of germline editing, the US National Academies of Science argued in February 2017, that “germline editing [clinical] research trials might be permitted, but only after much more research” (NAS 2017). A year later in July of 2018, the Nuffield Council on Bioethics went even further, when they concluded, “we can, indeed, envisage circumstances in which heritable genome editing interventions should be permitted” (Nuffield Council 2018). These changes in language, Daley suggested, indicated that there was a growing consensus among scientists in the field of genome editing that the science of germline editing was approaching its translational moment.

To be sure, the triumphant inevitability which informed Daley’s account has been problematized by many. For example, in an op-ed for the Washington Post published immediately after He Jiankui’s announcement, Benjamin Hurlbut (an invited speaker at the Summit), Sheila Jasanoff and Krishanu Saha argued that “we need more than a moratorium that controls when germline editing moves into reproductive medicine, but a process of genuine deliberation on whether it should move in this direction” (Hurlbut, Jasanoff, and Saha 2018). Moreover, many countries continue to expressly prohibit the implantation of gene-edited embryos, including China where the Regulation on Assisted Reproductive Technology issued by the Ministry of Health in July 2003 clearly states that “genetic manipulation of gametes, zygotes and embryos is prohibited” (§3.8). Nevertheless, it is perhaps not so surprising – even amidst the media frenzy surrounding He’s clinical human embryo editing experiments – that the Summit’s organizing committee members, in their final statement in Hong Kong on the 29th of November, proposed “it is time to define a rigorous, responsible translational pathway toward [clinical] trials … Such a pathway will require establishing standards for preclinical evidence and accuracy of gene modification, assessment of competency for practitioners of clinical trials, enforceable standards of professional behavior, and strong partnerships with patients and patient advocacy groups” (Baltimore et al. 2018). What is more, on that same day, the MIT Technology Review reported that the Stem Cell Institute at Harvard University was planning to use CRISPR to edit sperm cells “to show whether it is possible to create IVF babies with a greatly reduced risk of Alzheimer’s disease later in life” (Regalado 2018b). Indeed, the question of which diseases qualify as “appropriate” in the “disease free” imaginaries that proponents of human embryo editing invoke remains crucial as witnessed in the fall out surrounding He’s use of the technology not to prevent transmission of a genetic disease, but rather to enhance Lulu and Nana’s genome in ways that protected them from potentially contracting HIV in the future.

While witnessing He’s presentation at the Summit in Hong Kong, there was one slide in particular that caught the attention of audience members, many of whom took photos and tweeted the image with the hashtag #GeneEditSummit (see Figure 1). The significance of this slide from He’s presentation lay in its confident outline of human embryo editing as what we would call a total bio-reproductive platform. As the slide so clearly makes evident, what human embryo editing does is fuse multiple biomedical platforms into a seamless flowchart, namely “the IVF platform” (Franklin 2013), the next-generation sequencing (NGS) platform and the CRISPR/Cas9 platform respectively. Each of these technologies make up a biomedical platform in the sense proposed by Keating and Cambrosio (2000, 2003) in their own right, each having its set of protocols, standards and material techniques. In the paper that He and his collaborators had submitted to Nature, the following steps are described (see Regalado 2019):

• Whole Genome Sequencing (WGS) of parents as references against which to assess resulting embryos

• In vitro fertilization (IVF) via Intracytoplasmic Sperm Injection (ICSI) of harvested/collected gametes

• CRISPR/Cas9-gRNA gene editing of embryos in conjunction with ICSI

• Preimplantation Genetic Diagnosis (PGD) of resulting embryos to assess on-target and off-target activity following gene editing, followed by implantation of edited embryos

• Non-invasive Prenatal Testing (NIPT) of cell free foetal DNA during pregnancy to monitor and assess oncogene status and off-target activity

• Isolation and WGS of genomic DNA from cord blood, umbilical cord and placenta following birth to assess effects of editing

Figure 1. Audience members taking photos of He Jiankui’s presentation. Photo taken by PS.

In this way, human embryo editing brings together an entire gamut of new reproductive and genetic technologies that have been developed as specific biomedical platforms over the past four decades. Indeed, it is their existence as separate, routinized biomedical platforms that in important ways made human embryo editing possible. And, it is therefore not surprising that He would initiate collaborations with a reproductive clinic in Shenzhen exactly because they were already using many of the technologies that He needed (see Nie 2018). The slide He projected on to the large screen in the Grand Hall auditorium not only provided an overview of the methods that his team had used to “design” Lulu and Nana’s genomes, it also does the kind of discursive work that Keating and Cambrosio argue is necessary if a biomedical platform is to stabilize. In this way, however deficient He’s “world’s first” clinical application of human embryo editing has been, the development of a “rigorous, responsible translational pathway” will exactly entail refining and defining the particulars of a HGE platform – a way of arranging things materially and discursively – through the fusing of WGS, IVF/ICSI, CRISPR/Cas9, PGD and NIPT in the making of “edited” babies.

Now, to be sure, we have already seen how the ethics of He’s human embryo editing have been roundly condemned by scientists in China and beyond. Likewise, his scientific practices have also fallen under critical scrutiny as more details and data have emerged in the months following the Hong Kong summit. For example, having reviewed the manuscript submitted by He and his colleagues, Hank Greely has suggested that “none of the embryos got the 32-base-pair deletion to CCR5 that is known in millions of humans. Instead, the embryos/eventual babies got novel variations, whose effects are not clear” (cited in Regalado 2019). Hence, our suggestion that the Hong Kong summit might well end up being remembered as the translational moment whereby human embryo editing came to be platformed is not to imply that He and his collaborators did right or did well. What we are arguing is that the performative elements of that “world’s first” conference presentation is part of what makes new techno-futures imaginable. Three years prior to the Hong Kong Summit, stem cell scientist Huang Junjiu at Sun Yat-sen University had been the first to genetically modify human embryos in the laboratory without proceeding to implant them, followed by Fan Yong and his team at The Third Affiliated Hospital of Guangzhou Medical University who ended up advocating “preventing any application of genome editing on the human germline until after a rigorous and thorough evaluation and discussion are undertaken by the global research and ethics communities” (Kang et al. 2016, 581). While these initial experiments did make global headlines, He’s now infamous Hong Kong summit presentation constitutes, in much the same way that John Zhang’s Mexican press conference announcing the birth of the first “three-parent baby” did, as González Santos and colleagues put it “an exceptional performative moment of peak media visibility and a thickening of meaning” (2018, 437). Let us now turn to the substance of that thickening, namely imaginaries that involve socio-technical “disease-free” futures, which continued to be propagated as part of the ongoing platforming of human embryo editing.

Selective reproduction in a post #CRISPRbabies world

In 2014, Tine Gammeltoft and Ayo Wahlberg defined selective reproductive technologies (SRTs) as “laboratory and clinical techniques developed for the selective fertilization of gametes, implantation of embryos, or abortion of fetuses in order to prevent or allow the birth of certain kinds of children” (Gammeltoft and Wahlberg 2014, 201). It seems that with the birth of Lulu and Nana and with scientists also suggesting that the “CRISPR/Cas9 system could be used on growing immature oocytes or sperm to generate gene-corrected mature sperm or oocytes” (Vassena et al. 2016, 414), we may yet have to add “the selective editing of gametes and embryos” to this definition. Now, while we have already seen the ways in which germline modification of human gametes and embryos can and does lead to news headlines that invoke “Frankenstein” and a sense that we should not be “tampering with human nature” (see also Habermas 2003; Duster 2003), we have also seen that those scientists who work in the field of human embryo editing continue to push towards clinical application. Given the troubling legacies of State-led eugenic interventions that have sought to limit the reproduction of certain groups of people, proponents of SRTs (such as carrier testing, PGD and amniocentesis) maintain that they are about giving couples the choice to pursue certain futures for their potential children in which specific genetic diseases can be avoided. Proponents of human embryo editing have highlighted similar claims. In the final statement of the Hong Kong summit, for example, David Baltimore and colleagues make their case for continued research by arguing that “making changes in the DNA of embryos or gametes could allow parents who carry disease-causing mutations to have healthy, genetically related children” (Baltimore et al. 2018).

Yet, far from all colleague scientists are convinced that human embryo editing will ever make sense, as argued, for example by Lenphier and colleagues in a Nature comment piece entitled “Don’t edit the human germ line”:

The current ability to perform quality controls on only a subset of cells means that the precise effects of genetic modification to an embryo may be impossible to know until after birth. Even then, potential problems may not surface for years. Established methods, such as standard prenatal genetic diagnostics or in vitro fertilization (IVF) with the genetic profiling of embryos before implantation, are much better options for parents who both carry the same mutation for a disease. (Lanphier et al. 2015, 411)

The jury is still out, yet scientists seem to be determined to continue their efforts to identify an ethically sound route to the clinical use of human embryo editing. Only a few months after the He Jiankui scandal, the National Social Science Fund of China sponsored a project entitled “Ethical Research on Human Gene Editing” (2019) led by bioethicists in China who, alongside the scientific community, patient groups and families, have played an important role in opening up possible techno-scientific imaginaries of “disease free” futures. The future they are imagining is one that involves a proper and responsible development of science and technology innovation where strong ethical review processes become an important component in the ongoing platforming of human embryo editing. The latest international consensus report which came out in early 2020 continues to urge caution, suggesting that “No attempt to establish a pregnancy with a human embryo that has undergone genome editing should proceed unless and until it has been established that it is possible to efficiently and reliably make precise genomic changes without undesired changes in human embryos. These criteria have not yet been met” (National Academy of Sciences 2017, 3).

Nevertheless, we suggest that what continues to keep some scientists’ hopes up, driving their work towards a “responsible translational pathway,” (i.e. the platforming of human embryo editing) is the same sentiment that He invoked in his brief ethical protocol, namely the possibility of finding a “cure for numberless severe genetic diseases.” Prenatal screening and testing, PGD and now gene editing have all been “sold” as techniques to “eliminate suffering” by preventing the birth of children with a known genetic disease. In China, given the roll out of the infamous “one child policy” aimed at resolutely preventing birth, the pioneers of in vitro fertilization did not highlight the advantages of reproductive technologies for infertile couples who were “desperate” to have their own child; rather they pointed to their selective potentials in producing “good quality” children (Jiang 2015; Wahlberg 2018; Zhu and Dong 2018). And in the United Kingdom, as Celia Roberts and Sarah Franklin showed in their ethnography of preimplantation genetic diagnosis, while sparking a debate about “designer babies,” PGD was vigorously promoted by scientists and others as a “technique to help couples have healthy babies” (Franklin and Roberts Franklin and Roberts 2006, 67).

While reproductive technologies were initially developed to assist infertile couples in their quest for conception, as the case of human embryo editing shows us, these technologies are increasingly being mobilized in the name of families who are seeking “disease free” futures for their children. Such socio-technical imaginaries are of course a ruse to the extent that once conceived, an embryo-cum-child-cum-adult is by default at risk of any number of diseases whether genetic, congenital, infectious or noncommunicable, however much “designed.” What is more, as numerous studies have documented, the routinization of SRTs unavoidably generates discrimination and stigmatization of those families and children who live with a disability or medical condition that “could have been avoided” thereby amplifying many of the difficulties they already face in their daily lives (Thomas 2017).

Indeed, what remains to be heard are the voices of the “human subjects” of this selective reproductive technology – Lulu and Nana, their parents, and other potential (or current) “users” of these technologies. In an on-going ethnographic study on rare diseases in China, two of this article’s authors (Dong and Zhu) have observed polarized views on He’s scandal. In one WeChat group, on the day of his presentation in Hong Kong, a mother of a child with chromosomal disorders, carefully and hopefully asked about “gene editing” wondering whether the technology was already available as a therapy. Another mother of a child with a rare genetic condition responded that this was not the case and that, in her view, it would be going against nature to modify a human. Then there was a long silence. No one else talked about it in this WeChat group with more than 400 members as the scandal continued to unfold online, raising urgent questions about the ways in which new SRTs, such as human embryo editing, while ostensibly promoting the “elimination of suffering” and hopes of a “disease free” future, also often intensify already existing forms of stigmatization of disability in China and globally (see Kohrman 2005; Thomas 2017).

Conclusion

One day, human embryo editing may join carrier testing, PGD and prenatal screening/testing as yet another means for couples to selectively form their families. We are of course not by any means there yet and it is far from clear whether the promises and expectations that surround it will ever materialize. As shown in this article, there are many critics who continue to question whether the clinical application of human genome editing should ever be permitted. Still, if the 2018 Hong Kong Summit is anything to go by, then a global scientific scandal is not enough to put off substantial efforts to move germline genome editing into the clinic. At the same time, as many critics have pointed out, one of the biggest challenges facing translational human genome editing (if it ever does materialize and stabilize as a routinized total bio-reproductive platform) is that of access and equity. If anything, the technology will be even more expensive than IVF and PGD, both of which are already prohibitively expensive and out of reach for most. It is hard to see how a human genome editing platform could be made mobile and affordable anytime soon. Moreover, as glimpsed in some of the many social media commentaries on the He Jiankui scandals, questions around how human embryo editing will feed into forms of discrimination and stigmatization must urgently be researched.

Even if human genome editing never makes it from bench to bedside, we would nonetheless suggest that the human embryo editing platform that He summarized on his slide in Hong Kong – fusing as it does multiple biomedical platforms – will likely go on to shape the development and provision of reproductive technologies for many years to come. For, as next generation sequencing becomes more accessible and cheaper, it will very likely be routinized into a standard part of the provision of reproductive treatments, whether for infertility or to prevent disease. Whatever the next steps for human genome editing, we should not lose sight of Lulu, Nana, their parents as well as the six other couples who made global headlines from Hong Kong in November 2018.

Disclosure statement

Ayo Wahlberg was an invited Chair at the 2nd International Summit on Human Genome Editing in Hong Kong for a session on “Global Perspectives: Somatic and Germline Therapy, Prevention, and Enhancement Applications” given his many years of experience of research on selective reproduction.

Notes

1 Parts of this ethnographic account were previously published as a “Changing (In)fertilities” blog post in the days after the Hong Kong summit (see https://www.cifp.sociology.cam.ac.uk/blog/did-human-embryo-editing-just-get-platformed).