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Ethical Choreography in China’s Human Gene Editing Controversy
Larry Au, The City College of New York (lau1@ccny.cuny.edu)
Published in Science as Culture https://doi.org/10.1080/09505431.2023.2218401
Abstract: He Jiankui announced to the world in November 2018 that his team had genetically edited
twin human embryos that were then brought to term. Recruiting participants through an HIV outreach
group and using CRISPR/Cas9 technology, He targeted the CCR5 genes claiming this would make
the children immune to HIV. One way to understand He’s case is through Charis Thompson’s concept
of ethical choreography, which shows how scientists ‘invent around’ potential ethical objections to their
work. In particular, such a focus on ethical choreography traces how individual scientists can exploit
ambiguity in institutional boundaries to recombine different logics to advance their vision of good,
innovative, and ethical science. He’s actions can be seen to been the result of his traversal of blurred
boundaries that demarcate science/market and science/medicine in order to recombine academic,
market, medical, and cultural logics. This combination of logics is seen in ethical justifications that He
put forth for his experiment, which provoked much criticism and controversy, but should nonetheless
be taken seriously and placed in context. While He’s vision of good science was rejected, examples of
ethical choreography can be found in other instances of biomedical innovation and there remains the
potential for other scientists to pick up where He left off. Following the ethical choreography of
scientists also allows for more specificity in discussions about what and when boundaries should be
strengthened or relaxed in order to advance a more equitable vision of science and technology.
Keywords: CRISPR, gene-editing, China, scientific controversy, ethical choreography, boundary
work
Setting the Scene
News of He Jiankui’s gene edited babies broke on November 25, 2018 after documents on
the Chinese Clinical Trial Registry were uncovered (Regalado 2018). The next day, videos uploaded to
Youtube by The He Lab announced the successful births of twins Lulu and Nana. The videos claimed
that the CRISPR-Cas9 system was used to edit the CCR5 gene to confer the newborns with HIV
immunity. On November 27, He presented his work at the Second International Summit on Human
Genome Editing at the University of Hong Kong, where he faced intense criticism from audience
members. The story of the ‘world’s first gene edited babies’ was quickly picked up by international
news outlets, and He was labeled as a ‘rogue scientist’ who secretly carried out the work (e.g. Belluck
2018; Topol 2018).
Within China, a petition of over a hundred prominent Chinese scientists circulated widely on
Chinese social media, which ‘resolutely opposed and strongly condemned’ He’s work, arguing that it
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dealt a ‘huge blow to the reputation and the research by all Chinese researchers’ (Liping He 2018).
The China Academy of Medical Sciences (Wang et al. 2019) and the China Academy of Engineering
(B. Zhang et al. 2019) decried He’s unethical use of technology. The investigation by the Guangdong
Province into He’s research claimed that he ‘conducted the research in the pursuit of personal fame
and gain’ (Xinhua 2019). In December 2019, He was sentenced to three years in jail after a Shenzhen
court found that he had ‘forged ethical review documents and misled doctors into unknowingly
implanting gene-edited embryos’ (Normile 2019). This narrative of He’s deviance casts him as a bad
apple in an otherwise responsible global scientific community, invoking a boundary of good and bad
science.
Human germline editing—editing of parts of the genome in reproductive cells that can be
passed on to future generations—was flagged as a problematic area of research early on (Hurlbut 2017;
Evans 2002). These debates date back to at least the 1982 U.S. President’s Commission for the Study
of Ethical Problems in Medicine, and Biomedical and Behavioral Research report Splicing Life, when
key distinctions between therapy and enhancement were made (Addison 2017b; Martin and
Turkmendag 2021). These concerns were renewed at the First International Summit on Human Gene
Editing in Washington DC in 2015, where the irreversible effects of germline editing was recognized
and an agreement formed around the need for broad consensus for specific use cases (National
Academies 2016). As representatives of the Chinese delegation to the summit explained, ‘the
manipulation of the genes of human gametes, zygotes, or embryos for the purpose of reproduction
[is] prohibited’ in China (5).
But a gulf was also observed between Chinese researchers and international scientists, as it
became obvious that human germline editing was something that certain Chinese researchers at the
summit were willing to pursue, pointing to the fragility of this presumed ‘consensus’ (Jiang and Stevens
2015). In fact, researchers at Sun Yat-sen University in Guangzhou led by Huang Junjiu in April 2015
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had pursued germline editing on non-viable embryos (Regalado 2018b). These experiments were
replicated by scientists in other parts of China the next year. It was also recognized that CRISPR could
be ‘applied in uncontrolled ways and by scientists who may not be socialized into the notional global
community of responsible researchers’ (Nuffield Council on Bioethics 2016, 39). Nonetheless, in the
National Academies (2017) report Human Genome Editing: Science, Ethics, and Governance, criteria for the
potential use of germline editing included the ‘absence of reasonable alternatives’ (7-8). The report
cautioned that ‘there [remains] major technical challenges to be addressed in developing this
technology for safe and predictable use in humans’ (6). He’s violation of these norms have prompted
scientists to renew calls for an international moratorium on gene editing (Lander et al. 2019).
In my analysis, I ask two interrelated questions: (1) How did He justify his intervention?, and
(2) How did He navigate the blurry boundaries between science/market and science/medicine? In a
sense, this analysis attempts take seriously the justifications—no matter how absurd and ridiculous—
that He put forth for his actions, and to contextualize these claims to see how this hybrid logic of
justification was constructed by following this particular scientist at work (Latour 1987). To do this, I
build on Thompson’s (2013) concept of ethical choreography—the ways in which scientists ‘invent
around’ ethical objections to their work—and put this concept in conversation with the literature on
the blurred logics of entrepreneurial science (e.g. Etzkowttz 1989) and boundary work (Gieryn 1999),
as well as previous analysis of the controversy (Lei 2021; Kirksey 2020; Morrison and de Saille 2019;
Wahlberg et al. 2021; J. Y. Zhang and Burton 2022).
My analysis advances the concept of ethical choreography by emphasizing how scientists cross
blurred boundaries to craft hybrid justifications for what is considered innovative and good in science.
While He failed spectacularly, if He had succeeded, his ‘individualized regulatory strategy’ (H. Chen
2009) could have institutionalized problematic practices. While the further blurring of boundaries that
divide different social fields may have resulted, this particular episode of ethical choreography created
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hybrid logics that led to more boundary work and policing—from other scientists and the Chinese
state—that attempts to disentangle the socio-technical relations that were enmeshed together.
I begin by revisiting previous explanations of He’s actions, and providing a theoretical
elaboration of the concept of ethical choreography. I then detail the institutional landscape of gene
editing in China, and show how the concept of ethical choreography can analyze how He recombined
market, academic, clinical, and cultural logics. I end with some conclusions of what this concept can
tell us about biomedical innovation and scientific controversies more generally, and the value of an
STS-analysis that is informed by political economy.
Previous Studies of the Controversy
My analysis of the He case accords with and builds on the findings and analysis of other recent
studies. In Lei’s (2021) mapping of this controversy through interviews and social media analysis, Lei
documented the shifting boundaries of permissible science between scientists and publics. Invoking
the notion of ‘boundary politics’ (Ku 1998), Lei examines the intersections of the scientific and public
spheres at the national and transnational levels. Specifically, Lei describes the ‘boundary-crossing
publicity strategy’ (417) used by He to exploit the ambiguities between these spheres in order to
displace the grip that field elites had over the technology. As Lei points out, this resulted in the
intervention from the Chinese state to redraw the ‘boundaries between openness and secrecy’ (423)
once the controversy erupted, leading to stricter enforcement of boundaries that were previously left
unpoliced.
Likewise, Kirksey’s (2020) ethnographic account introduces us to the wide range of actors—
located in universities, biotechnology firms, hospitals, and patient activist organizations—implicated
in the debate over the future of gene editing, each with different degrees of power over the future of
the technology. With access to He’s family to colleagues, Kirskey argues that aspirations with gene
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editing often ‘blurred the boundaries of science fiction and fact’ (105), pointing to the broader cultural
map within which science is located. As Kirskey argues, the knee-jerk reaction to this controversy and
increased boundary policing, may silence the voices of marginalized actors such as disability rights
activists. Similarly, Morrison and de Saille (2019) argue that engagement with the public on gene
editing is needed, but consensus is hampered by the ‘continued separation of ‘technical’ issues of safety
and efficacy from ‘moral’ issues associated with the technology’ (3). Zhang and Burton (2022) also
note, the relationship between bioethics and the ability of critical voices to influence the work of
scientists and to police the boundaries of ethical and unethical science is also different in China. My
account of ethical choreography further scrutinizes the issues of boundary work raised by these studies.
Aside from academic analysis of He’s actions, there have also been three strands of analysis
from scientists. First, individual criticisms of He pointed to his lack of qualifications and relevant
expertise to carry out gene editing, pointing to his background in biophysics. This translated to He’s
implementation of gene editing. As Jennifer Phillips from the University of Oregon noted, He’s slides
in Hong Kong had shown that his gene editing had aimed to recreate a well-documented 32 base pair
deletion at the CCR5 gene, but instead, he has only deleted 15 base pairs for Lulu and 4 base pairs for
Nana (Zimmer 2018). Furthermore, there are likely problems associated with mosaicism, or the
existence of multiple versions of the genome in an organism, and the unanticipated consequences of
CCR5 deletion. Second, many pointed out that He broke already established rules and regulation and
that what is needed to prevent future incidents is better enforcement. For instance, the Lancet letter
from the Chinese Academy of Medical Science stated that while there were already rules on the books:
‘Clearly, more practical guidelines are necessary for emerging technologies. In view of the
technological progress of genome editing and new challenges to medical ethics’.
Third, criticisms of He on procedural grounds pointed out that he violated the norms of science
as he did not go through peer review—turning to Youtube to publicize his work instead—and that a
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more open process would have allowed the scientific community to better regulate him. Advocates of
germline editing have focused on heritable diseases that have no known cures, which HIV is not
(Begley 2019a). But, as I argue, He’s ethical choreography was imagined as a way for him to navigate
around these various roadblocks and objections.
Figure 1: He Jiankui at the Second International Summit on Human Genome Editing in Nov 2018
(source: The National Academies of Science, CC BY-NC-SA 2.0)
My analysis draws primarily on media reports of the He controversy, collected through news
databases, as well as publicly available documentary sources from the He Lab, such as his manifesto
(J. He et al. 2018). Documents were collected in real-time during the controversy, and news reports
were queried systematically using keywords such as He Jiankui, CRISPR, and China on databases such
as UniNexis. In drawing on these media reports about this case, I recognize the limitations of
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journalistic reporting, such as tendencies towards sensationalism. The writing of non-China-based
journalists in particular also has limitations in terms of access and sensitivity to local context.
Additionally, I also draw on a reading of scientific articles about CRISPR by Chinese scientists.
Articles were retrieved from Web of Science, with topic (abstract, keywords, titles) containing
“CRISPR”. These were then analyzed using the R-package bibliometrix. This excludes other systems
used for gene editing. In my analysis, I triangulate events by consulting secondary sources and other
writing about the He controversy, in order to fill in some of the gaps
Ethical Choreography, Boundary Work, and Blurred Boundaries
What is ethical choreography? The concept of ethical choreography situates He’s actions in
context, while taking into account the agency of individual scientists in charting new areas of science.
Ethical choreography, according to Thompson (2013), is a form of coordination and calibration of
what is and is not considered good science by different audiences. Using the case of stem cell research,
Thompson writes:
During this period of consolidation, normalization, and public inuring amid controversy, stem
cell research was an object of more multidisciplinary ethical debate and labor than is typical for
advances in science and technology generally. For example, important work was achieved by
this attention: attempts to ‘invent around’ ethical roadblocks by scientists were transformative
for the field, educational materials were developed, and access to therapies and to revenue
were fought for (5).
Ethical choreography allows scientists to not just create new innovations, it also proposes ethical fixes.
Technology and ethics, in this definition, can be understood as a package that enable the scientist and
those that follow them to work in areas that would otherwise be labeled as untenable and unethical.
In my analysis, I understand ethical choreography as the work performed by scientists in
recombining different institutional logics, in order to justify and advance their vision of what is good—
in the ethical and scientific sense. Ethical choreography therefore allows scientists to bypass and
preempt potential objections from critics and dissenters. Similar to reactions to He’s actions, in the
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controversies covered by Thompson, scientists ‘helped the field draw boundaries around itself and to
cement its international legitimacy and maturity by excluding “bad science” practiced elsewhere’ (22).
Such boundary work that demarcates good from bad science, is thus crucial in the ethical
choreography of scientists. In this account of He, I pay attention to the carefully choreographed moves
that He makes to justify his intervention.
This is also akin to Boltanski and Thévenot’s (2006 [1991]) economies of worth framework
and account of normative and moral repertoires. At the core of this framework are questions of
legitimacy and justice, not unlike how the ethical choreography of scientists aim to objectify a certain
vision of the world and certify it as ‘good’. As they write, ‘the fact remains that persons are not always
obliged to make their associations explicit, and, a fortiori, they are not obliged to provide grounds for
establishing them; we also have to allow for the possibility of ill-founded associations' (32). Focusing
on ethical choreography is a way to make these associations explicit.
Where does ethical choreography take place? Such choreography takes place across boundaries
that separate different social fields. Boundary work, as Gieryn (1999; 1983) reminds us, is only possible
when it references the broader cultural map within which science is situated, as well as the distinction
of ‘science’ from ‘non-science’. Gieryn (1999) writes:
We learn about science by seeing what is far from it, or near: Blind Island is far away; much
nearer are College Mountains, the town of Reason, and Intelligence River… From this map,
we learn what science is by finding where Mount Science is located—and we learn how to get
there, why one might want to visit, and the costs of getting lost (7).
On the cultural map of science, science is understood in relation to norms of science, such as
disinterestedness, universalism, organized skepticism, and communism (Merton 1979), as well as
against things like superstition, irrationality, and dogma. When science veers too close to the bad,
scientists are sanctioned not only by their peers, but by broader society.
The dynamics of boundary work is particularly evident during the emergence of new fields
and technologies (Addison 2017b; Sleeboom-Faulkner 2010; Wainwright et al. 2006), in areas of social
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and scientific controversy (Frith, Jacoby, and Gabbay 2011; Tseng 2021; Mizrachi, Shuval, and Gross
2005; Hobson-West 2012; Ehrich et al. 2006), and in separating and including the public in the
processes of scientific discovery (Kasperowski, Hagen, and Rohden 2021; Au 2020). As Wainwright
et al (2006) argues, this ‘ethical boundary work’ or ‘how scientists draw the boundaries of ethical
scientific activity’ (735) takes places to not only differentiate science from non-science, but also from
different approaches to good science. Frith, Jacoby, and Gabbay (2011) further extend this by
contrasting the different forms of ethical boundary work performed in ‘settled’ and ‘controversial’
domains. Sleeboom-Faulkner (2010) further notes that Chinese scientists did not necessarily reject
international norms, rather adopted a more ‘flexible’ approach in their boundary work of what they
considered to be good science. My use of ethical choreography extends these conceptualizations of
ethical boundary work by extending the cultural map by tracing where scientists go to seek out
justifications for their experiments. Ethical choreography brings us to not just scientific domains, but
also to market, medicine, and other cultural institutions.
In analyzing this case, I pay attention to two sets of blurry boundaries: between science/market,
and science/medicine. The literature on the blurry institutional logics between science and market is
useful in thinking about the ethical choreography that transcends the boundaries of science (Kleinman
1998; Vallas and Kleinman 2008; Berman 2011; Etzkowttz 1989; Birch and Tyfield 2013; Hackett
1990; Etzkowitz and Leydesdorff 2000; Coplin 2019). Etzkowttz (1989) points out, the research
university’s mission has grown to include entrepreneurship and economic development in response
to federal government policies. Etzkowittz argues, ‘the material conditions of academic scientific work,
along with its particular location in the university, are producing changes in the ways scientists and
various support personnel think science should be done’ (26). The practice of university patenting,
encouraged in part by federal policy and university patent administrators, was further bolstered by the
Bayh-Dole Act of 1980 (Berman 2008). The developmental state in the U.S., in the series of federally
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and state coordinated networks of laboratories and research centers, has also played a pivotal role in
creating new forms of entrepreneurial science (Block and Keller 2015).
This blurring of scientific and market logics is particularly seen in various fields in biology, as
evident in the proliferation of concepts such as bioeconomy, biovalue, and biocapital (Birch and
Tyfield 2013). Scientific life, as a result, and what science ought to look like has also been transformed
(Shapin 2009; Hackett 1990; Kleinman 1998). However, while boundary blurring has produced new
hybrids science/commerce and academia/industry, such logics can still remain distinct (Murray 2010).
This ‘triple helix’ of state, industry, and academia has also been globalized and exported to different
parts of the world (Etzkowitz and Leydesdorff 2000). Coplin’s (2019) study of agro-biotech in China
and organizational chimerism shows that such blurry boundaries is rampant in the sector, enabling
Chinese scientific actors to leverage state support in the private market and vice versa, and creating
hybrid forms of organizations. Song (2017) also describes this as “medical entrepreneurship with
Chinese characteristics”, pointing to the political economy of medicine in China that has incentivized
experimentalism. Ethical choreographers thus make use of resources in science and the market, and
respond to various incentives of fame, recognition, profit, and invention.
Beyond science and the market, blurry boundaries also exist between science and medicine,
through the rise of biomedicine and scientific medicine. In the past three decades, numerous
scientific/intellectual movements have attempted to transform the norms, ethical commitments,
practices, and priorities of medicine, such as with precision medicine, translational medicine, and
evidence-based medicine (Juengst et al. 2016; Erikainen and Chan 2019; Au 2021). The rise of
translational medicine—or the application of findings in basic science to the clinic—in particular has
blurred the boundaries between science and medicine, as well as the ethical commitments in the two
institutional fields (Cribb et al. 2008). This ethos of translation also brings with it ‘a new social contract
for the way science works in society. Instead of implicit promissory notes about eventual results,
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scientists must promise specific results up front […] they must produce results sooner rather than
later and more specifically targeted for particular ends rather than for general good’ (Maienschein et
al. 2008, 43).
This has also been described as the ‘biotechnical embrace’ of the medical imaginary, where
‘the world’s dominant economies invest private and public monies in the production of biotechnology
and aggressively seek to integrate these advances into clinical practice’ (Delvecchio-Good 2001, 407).
In more experimental applications such as gene therapy, studies have also noted that often, ‘[the work
of scientists] exceeds the rules while complying precisely with them’ (Addison 2017, 36), creating an
opening in the ethical choreography of scientists, where new choreographies on what is permissible
can be proposed. He’s ethical choreography also took advantage of the blurring of scientific and
medical logics.
Other studies of scientific misconduct have also pointed to the importance of blurry
institutional boundaries in the ethical choreography of the offending scientists. As Berggren and
Karabag (2019) point out in the case of the Karolinska Institute and the Karolinska University
Hospital in Sweden, and the controversial surgeon Paolo Macchiarini, what was at fault in his scientific
misconduct should be attributed to the competing market-oriented logic with scientific and medical
logics. As Berggren and Karabag argue, the case ‘illustrates the power of a market-oriented logic
focused on brand and image at a leading research institute and at leading journals, but also emphasizes
the perseverance of other logics, the logics of academic scrutiny and medical care, even when the
carriers of these logics are weakly organized in relation to the carriers of the market-oriented logic’
(437). In other words, what transpired at Karolinska was not an anomaly, but rather the outcome of
the mixture of institutional logics at play. This is similar to Thompson’s (2013) call to ‘resist the idea
that [scientific fraud and misconduct] is fundamentally disjunctive with ordinary science’ (62) in the
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Hwang Woo-suk affair in South Korea. Through the concept of boundary-blurring ethical
choreography, I show how the recombination of various institutional logics explains He’s case.
The Chinese Institutional Context
To understand the broader institutional contexts that He’s ethical choreography is situated, I
highlight three characteristics of the Chinese case that previous studies of science in China have
documented. First, geopolitical tensions between China and the U.S. have spilled over into how the
Chinese state imagines innovations and applications of CRISPR. A bibliometric analysis of 8,389
CRISPR-related articles published between 2008 and 2018 shows that this growth followed a high
growth rate with the total output doubling every two years. In 2008, 19 articles were published,
compared to 2917 in 2018. The two most productive countries, as measured by countries affiliated
with authors of a publication, are the United States and China, with 3,262 and 1,554 articles published
respectively. In press coverage of CRISPR gene editing technology in China and the United States
shows that this closing gap between the two countries in terms of research output was interpreted
through the frame of technonationalist competition (see also Au 2020). For instance, in English
language press, headlines and editorials such as ‘gene editing could cause the next Cold War’ (Istvan
2016), ‘the West is losing the gene editing race’ (Choulika 2018), and ‘China is beating the U.S. in the
gene editing arms race’ (Mukherjee 2018) can frequently be observed.
Articles in Chinese on biotech news sites also framed research activity around gene editing
along the lines of competition, as a headline declared ‘China speeds ahead: Gene editing technology
used in clinical settings, China leads the U.S. by more than two years’ (Bioon.com 2018a). Another
headline read, ‘China may overtake the U.S. and become the ‘world center’ of primate gene editing
research’ (Bioon.com 2018b). This framing draws on the narrative of China’s rise as the ‘next science
superpower’ (Wilsdon 2007). Such a competitive environment raises the stakes of scientific research
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to the level of geopolitical competition. Investments into the field by the state could be influenced by
such narratives of technological and scientific competition. Speed, output, impact, and novelty were
prioritized to advance technonationalist ambitions, creating the conditions for He to claim, in his
ethical choreography, the urgency in applying his intervention.
Second, the weak regulatory oversight in China at the time can help explain how He was able to
chart his own ethical choreography. To be clear: He did violate established laws and regulations in
China. As observers have pointed out after the controversy, He’s actions violated the Guiding
Principles of Ethics for Human Embryonic Stem Cell Research (2003), Ethics Principles for Human
Assisted Reproductive Technology and Human Sperm Bank (2003), Ethical Review Measures for
Biomedical Research Involving Human Beings (2016), and Safety Management Measures for
Biotechnology Research and Development (2017). However, the state apparatus that oversees gene
editing research in China is spread out across numerous initiatives, programs, and agencies. As Jiang
and Rosemann (2019) presciently showed, the legal status of gene editing of the human embryo in
China in the domains of patent law, birth control regulations, and in civil law was highly uncertain,
leading to tensions between various stakeholders. Moreover, this ‘This rather “narrow” regulatory
approach seems to ignore the broader societal implications of human embryo gene editing research,
including the challenges to systematically govern this technology field across China’s large territory
and thousands of medical institutions’ (18).
As Chan (2009) notes with the governance of stem cell research in China, this has not quite
resulted in the ‘Wild East’ of regulatory absence; rather, ‘individualized regulatory strategies’ advanced
by different stakeholders that combine ‘hard regulation with soft regulation’ (268). As Greenhalgh
(2008) documents with China’s ‘one child policy’, policy implementation in China often occurs first
by slogan, followed by localized experimentation and then the adoption of successful models by the
central authorities. In the case of gene editing, what is regulated falls under the rubric of education,
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science and technology, economic development, and public health (see also Cao 2021). This created a
situation where the responsibility for regulating science has become harder to attribute to a single state
agency, creating room for He to create his own ethical choreography that appeals to different
audiences.
Third, Chinese scientists were afforded a high degree of autonomy because of their social status
and the emphasis that the state placed on talent recruitment. In the past two decades, the life sciences
have become central to the state’s plans to position China as a ‘global leader’ (Cao 2017; Salter et al.
2016; Wahlberg 2012). For gene editing, the nascent field has benefited from the state’s interest in
genomics as a ‘strategic emerging industry’ in its 13th Five Year Plan and as a ‘key strategy’ of improving
the medical system in China in the Healthy China 2030 plan. Frontier technologies such as gene editing
are imagined to play a role even in health policy. Because of this, scientists in this area receive
preferential treatment in science funding schemes, such as the 863 Program and the 973 Program.
One state program that has attracted attention is the Thousand Talents Plan, created in part due to
the worries about ‘brain drain’ (Zweig and Wang 2013), of which He was an awardee (Jing 2018). .
This form of ‘networked technonationalism’ allows China to take advantage of the relatively free flow
of talent, while maintaining control over which industries and fields to develop strategically (Ibata-
Arens 2019; Au and da Silva 2021) and fostering science-based innovation (Y. Zhou and Coplin 2022).
Combined with provincial and municipal money set aside for similar purposes, such as the
Phoenix Plan in Beijing and the Peacock Plan in Shenzhen, overseas researchers were incentivized to
return to China and carry out their work. Researchers in the life sciences, like He, have received more
Thousand Talents Plan than researchers in other academic fields (Cao 2017). The lead authors of the
top five most cited articles from China related to CRISPR (Chang et al. 2013; Niu et al. 2014; Wang
et al. 2014; Liang et al. 2015; Shi et al. 2015), four were led by beneficiaries of the Thousand Talents
Plan. In addition to the Thousand Talent’s Plan, from the Chinese Clinical Trial Registry
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documentation submitted in conjunction with He’s experiment, He also received a ‘Free Exploration
Grant’ from the Shenzhen Innovation Commission (although the municipal government denies this).
As Coplin (2019) and Stevens (2018) notes of Shenzhen, where He was located, there is also a
particular repertoire of hybridity, as seen with the case of BGI (which used to stand for Beijing
Genomics Institute), where biomedical entrepreneurs could disrupt traditional models of
technoscience. These factors created the conditions where He could choreograph his own vision of
good science.
He’s Ethical Choreography
Amidst this backdrop of intense scientific competition, loose regulation, and autonomy
afforded to individual scientific experts, He made use of the indeterminacy of his location amongst
various organizations—his university, company, hospital, and an NGO—and utilized different forms
of resources and logics to justify his actions through ethical choreography. In particular, I focus on
two sets of boundaries where this ethical choreography unfolded: (1) the science/market and (2) the
science/medicine boundaries, and the associated academic, market, clinical, and cultural logics that
He mobilized to legitimate his actions. Such logics operate within the domains that these boundaries
nominally demarcate.
To take He’s justifications seriously, consider the ‘Draft Ethical Principles for Therapeutic
Assisted Reproductive Technologies’ (J. He et al. 2018) that He provided to legitimate his actions.
This article was published by the CRISPR Journal, but was subsequently retracted. The five principles
are as follows:
1. Mercy for families in need: ‘A broken gene, infertility, or a preventable disease should not
extinguish life or undermine a loving couple’s union’
2. Only for serious disease, never vanity: ‘Performing gene surgery is only permissible when the
risks of the procedure are outweighed by a serious medical need’
3. Respect a child’s autonomy: ‘After gene surgery, a child has equal rights to live freely, to choose
his or her occupation, to citizenship, and to privacy’
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4. Genes do not define you: ‘Our DNA does not predetermine our purpose or what we could
achieve’
5. Everyone deserves freedom from genetic disease: ‘Wealth should not determine health.
Organizations developing genetic cures have a deep moral obligation to serve families of every
background’
In this manifesto, we can observe a multitude of justifications for He’s subsequent intervention.
The logic of science was invoked, in discussing the science of genetics and DNA, as well as the ability
of science to alter DNA and ensure that ‘genes do not define you’. The market logic can also be seen
in operation, as He argues that ‘organizations developing genetic cures have a deep moral obligation
to serve families’. The medical logic of disease is also invoked, in labeling HIV a ‘serious disease’ and
‘genetic disease’ that should be prevented—despite widespread scientific disagreement on He’s
characterization of HIV—and the ability of ‘gene surgery’ to address ‘serious medical need’.
Additionally, the cultural logic of ‘mercy for families’ is invoked, by pointing to the need to ensure the
continuation of the familial line in Chinese culture.
In what follows, I will describe more in detail how these logics were invoked by He through
his ethical choreography. First, at the blurry science/market boundary, He combined both academic logic
and market logic. He relied on an academic logic to legitimate his research and broaden his network of
allies. He’s role as an academic was cemented when he was recruited as a faculty member in 2012 at
the Southern University of Science and Technology after completing his Ph.D. at Rice University and
his post-doctoral training at Stanford University. SUST is a newly formed university in Shenzhen
founded in 2011 that sought to position itself as a leader in biotechnology and genomics. The
‘experimental university’ (Yuan 2017) tried to distinguish itself by hiring mostly researchers with
teaching experience in foreign universities, and quickly rose through the rankings to become 3rd in
Guangdong and 43rd in all of China, receiving the right to confer doctoral degrees in 2018. He’s
research at SUST on viral genetics of H7N9 received national news coverage (S. Chen 2013). He was
described as many as fame-seeking and relished being the ‘first’ to accomplish a scientific feat. His
17
description of the project in his ethics approval form stated: ‘The project will stand out in the
increasingly intense international competition of gene editing technologies… This creative research
will be more significant than the IVF technique which won the 2010 Nobel Prize, and bring about the
dawn of the cure for numberless genetic diseases’ (Begley and Joseph 2018).
He’s identity as an academic enabled him to build a ‘circle of trust’ of fellow academics with
whom he confided his plans for gene editing human embryos and solicited technical advice (Cohen
2019). He’s doctoral advisor at Rice University was reportedly present at consent meetings where He
enrolled participants, and He consulted with Stanford scientists and bioethicists that he became
acquainted with during his post-doctoral training, who cautioned He not to pursue germline editing
in private, but remained silent publicly largely because of norms around not discussing non-published
scientific work. He was also a frequent presenter and lecturer at institutions across the United States,
such as the Cold Spring Harbor Laboratory and UC Berkeley, where he presented findings from his
attempts at gene editing mice and human embryos. He’s status as an academic thus gave him scientific
credibility and access to a wider network of scientific experts, both within China and abroad.
At this boundary, He also borrowed from the market logic in his activities as a biotechnology
entrepreneur, highlighting the potential commercial prospects of his intervention. It should be noted
that both Direct Genomics and SUST denied any knowledge or connections to He’s experiments, and
stated that the experiment was not company on company or university premises. But as the CEO of
Direct Genomics, which he founded in 2012, He helped develop the GenoCare third generation single
molecule sequencing platform and to provide genetic testing for a wide range of diseases, then not
offered by other companies, at the low cost of $100. A 2016 China Daily article praised the company,
stating ‘the four-year-old Chinese company is becoming one of the leaders in the genome sequencing
area’. In the same article, He stated that Stephen Quake was on his scientific advisory board, and that
‘Quake is not only a scientist, but also an entrepreneur who owns a number of companies. Due to his
18
influence, I thought it was important to commercialize those scientific achievements, and that
prompted me to set up my own company’ (M. Zhou 2016). Another China Daily article from 2018
quoted He as saying ‘I really appreciate the school giving me the green light and resources to pursue
my dream’, and that he ‘founded Direct Genomics with resources and experts from the university’,
pointing to the porous boundaries between the university and his company (Z. Zhang 2018).
He’s upwards social trajectory and vast ambitions is also noted in news reports. Before the
controversy, Direct Genomics was valued at over $200 million USD. He also founded Vienomics
Biotech, and was a shareholder in other biotech companies, such as Nanke Biotechnology (He, Zhang,
and Moon 2018). In his visits to the United States, He would set up meetings with potential investors,
such as JP Morgan Chase, Leerink Swann, and Goodwin Procter & Company (Direct Genomics
2016a). He was also an aspiring entrepreneur, frequenting Bay Area Chinese entrepreneur salons
(Direct Genomics 2016b), with hopes of setting a research institute in the Bay Area to attract more
talent to his company (M. Zhou 2016), and his co-workers compared him to Elon Musk (Low 2018).
It also emerged after the controversy that He planned to monetize his gene editing research, and he
had received inquiry from fertility clinics outside of China (Begley 2019b), and was reportedly in talks
with John Zhang, a New York fertility expert who ran one of the city’s largest fertility clinics to open
gene editing fertility clinics in China or Thailand (Regalado 2019). This blurring of organizational
boundaries enabled He to make use of the academic and market logics.
Second, at the blurry science/medicine boundary, He combined a medical logic and a cultural logic
of disease. He relied on a medical logic by taking advantage of procedural mechanism such as ethical
reviews. He claimed that he went through ethical review at the Harmonicare Shenzhen Women and
Children’s Hospital according to his filing with the Chinese Clinical Trial Registry. The hospital,
founded in 2003, is privately operated and listed on the Hong Kong Stock Exchange. Harmonicare’s
administrator who chaired the ethics panel Lin Zhitong at first told the Associated Press that ‘we think
19
this is ethical’ (Marchione 2018) and that ‘his hospital’s ethics committee advised He, but had no other
involvement’ (Larson 2018). The hospital later claimed that ‘it had filed a complaint with [the] police,
accusing He of falsifying documents’ (Shen, Cheung, and Zhang 2018). A spokesperson added that
‘What we can say for sure is that the gene editing process did not take place at our hospital. The babies
were not born here either’ (Liao 2018). Assuming that signatures on the scanned form on the Chinese
Clinical Trial Registry were not forged, it is worth pointing out that Lin, the head of the ethics board,
is neither medically trained nor does he have any other relevant bioethical qualifications, other than
his ownership of the hospital. By going through the motions of this ethical review, He’s ethical
choreography allowed him to claim that the intervention did not contravene bioethics.
He’s actions are only understandable when the broader cultural logic of disease is taken into
account. He conducted his research with the help of a Beijing-based HIV/AIDS outreach NGO
Baihualin. Baihualin helped He recruit potential participants in his study, locating some 200 individuals,
and eventually put He in contact with 50 of the individuals. Bai Hua, the head of the NGO, told the
media that, ‘I thought it was just a scientific research project. It was our first time in dealing in this
area and we are no ethics experts’, adding that he felt ‘deceived’ by He (Y. Zhang 2018). He used the
plight of the HIV positive father to justify his intervention. As seen in He’s statement of ethical
principles, the HIV positive father’s inability to bring a ‘healthy child’ into the world is emphasized,
which draws on cultural scripts in China of continuing one’s familial lineage. This is also emphasized
in He’s Youtube videos (The He Lab 2018).
Critics of He also noted that his experiment violated these ethical principles that he proposed,
especially since HIV is not a ‘genetic disease’. But this ignores the fact that the idea of what a serious
disease is depends on cultural context. In China, the stigma of HIV is still a barrier to access for
employment and social services—this is in stark contrast to the way in which HIV is treated in places
like the United States, as a chronic condition (Rao et al. 2008; Yang and Kleinman 2008). Furthermore,
20
HIV was further stigmatized as a ‘foreign disease’, associated with ‘money worshiping, hedonism’, and
“decadent”, “bourgeois” lifestyles’ (Gewirtz 2020, 251). While public health interventions around HIV
have improved the condition of patients somewhat, within the authoritarian context of China, this has
also generated new forms of repression and symbolic violence (Long 2018; Liu 2020). The cultural
logics of disease and the continuation of the familial line, provided additional ethical cover to He as
he sought to legitimate his intervention. The lack of civil society in China also hindered the
development of patient organizations, as there are ‘relatively small number of organizations, a low
level of specialization, a lack of stability, limited social influence, and limited access to social resources’
(Huang et al. 2019). By combining cultural logics with medical logic, He was able to justify his
intervention, framing it as a cure for the family’s woes.
Conclusion
The controversy sparked by He Jiankui’s decision to use CRISPR gene editing technology to
attempt to confer HIV immunity to the twins Lulu and Nana caused an international furor due to its
violation of seemingly widely accepted prohibitions against germline gene editing. This analysis follows
Latour’s (1987) call to ‘follow scientists in action’ by advancing Thompson’s (2013) notion of ethical
choreography. While limited by the data, through tracing the scientist’s utterances, writings, and travels,
we can come to see the ethical choreography that was performed to promote a particular vision of
good, innovative, and ethical science.
First, He’s choreography can be read against China’s institutional context—the geopolitical
tensions that prioritized speed in research, the loose regulatory oversight, and the autonomy and
incentives afforded to scientists—which provided the conditions where He was able to advance his
vision. Second, focusing on He’s choreography highlights the traversal of boundaries between
science/market and science/medicine, which enabled him to draw on hybrid logics to justify and
21
legitimate his intervention. It is important to note here that these are not simply scripts and repertoires
that He used to discursively bolster his work; rather, these were concrete and material resources that
helped him carry out his work. Third, had reception to He’s work not been as global or negative, these
ethical justifications may have been taken up as plausible roadmaps for future gene editing
interventions. However, this controversy did not end up with blurrier boundaries, but rather provoked
boundary policing from the Chinese state and the scientific community.
In spite of the punishment of He, ironically, one of the results of this controversy was the
premature ‘platforming’ of human embryo gene editing and the proliferation of a sociotechnical
imaginary of a ‘disease free’ future (Wahlberg et al. 2021) which has made such interventions even
more ‘thinkable’ (Martin and Turkmendag 2021). Furthermore, while scientists in the U.S. and Europe
may also harbor similar ambitions and sympathies, many are well aware that such a course of action
would not be seen as justifiable by regulators, peers, and audiences in their respective communities. As
Cribb (2020) powerfully argues, ‘the more we can strengthen analyses of both the containment and
the production of ethical contention the better placed we are to ask more penetrating questions about
the way overt ethical debates and processes arise – what and who is made salient by them’ (22). Ethical
choreography of the sort that He performed is not unique to China or to scientific controversies, but
rather, a part of everyday biomedical innovation. Critics have already pointed to the need to have a
more ‘cosmopolitan conversation’ (Jasanoff and Hurlbut 2018) around germline gene editing and the
need for ‘technologies of humility’ (Jasanoff 2005), which forces scientists to consider the limits of
their expertise.
Neither relaxing nor policing all boundaries is clearly the answer. There is a need for stronger
checks on certain boundaries, such as that between the market/science to prevent the profit motive
from hijacking science, while other boundaries, such as between science/society, can be relaxed to
promote a more transparent reflection and debate on what values should drive science. There are no
22
easy answers here on what the proper response to this crisis should be. As Eyal (2019) notes of the
crisis of expertise, the impulse to use participation (to include more patients and members of the
public) and the reaction to label who the credible and good experts are and who the bad ones are
(similar to the case of boundary policing in He’s case) can backfire.
While these strategies are invoked to provide temporary solutions to intractable problems—
such as stemming accusations of exclusion and the lack of diverse voices and the punishment of ‘rogue’
scientists—these reactions create longer term problems—for instance allowing for commercial
interests to represent themselves as patient advocates and the lack of scrutiny of supposedly ‘good’
scientists. By following scientists and focusing on ethical choreography, policymakers and the broader
scientific community can consider when to allow crossing and at what boundary. Furthermore,
boundaries can also, in the longer term, be contested and redrawn in ways that maximizes the potential
for ethical choreographies that maximizes the public good.
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