Looking Back into the Future: CRISPR and Social Values BioGovernance Common's Open Discussion with Chinese Academics

Full text

Looking Back into the Future: CRISPR and Social Values
BioGovernance Common’s Open Discussion with Chinese Academics
Joy Y. Zhang, Ruipeng Lei, Kathleen Vogel, Sonia Ben Ouagrham-Gormley
13 February 2023
To cite:
Joy Y. Zhang, Ruipeng Lei, Kathleen Vogel, Sonia Ben Ouagrham-Gormley (2023) Looking Back into the Future:
CRISPR and Social Values: BioGovernance Common’s Open Discussion with Chinese Academics. 13 February.
Canterbury: Centre for Global Science and Epistemic Justice, University of Kent
Table of Contents:
Executive Summary
Our Main Aim
Why We Invited Dr. Jiankui He
Our Approach to the Media
A Summary of the Speakers’ Input
A Summary of the Discussion
Looking Back into the Future: The BioGovernance Commons’ Perspective
1

On 11 February 2023, the Centre for Global Science and Epistemic Justice at the
University of Kent hosted an open discussion on CRISPR technology for and with Chinese
academics, titled ‘Looking Back into the Future: CRISPR and Social Values’. This was part
of the BioGovernance Commons initiative founded by us in the summer of 2021, which
functions as a trusted forum for researchers inside and outside China to meet regularly,
under the motto “sharing perspectives on shared challenges.” The event lasted more than
2 hours and attracted participants from 13 different countries, as well as academics from at
least 12 of the 34 provincial jurisdictions in China. In total, approximately 110 people
attended the meeting, 70 of which were based in China.
Executive Summary
As organisers, we highlight these main points from the event:
1. We’ve exposed that there is little substance behind the ambitious Duchenne
muscular dystrophy (DMD) gene therapy that Dr. Jiankui He, the scientist behind
the illegal heritable human genome editing, has been boasting about to global
patients. We were concerned that he might endanger another vulnerable population
if his new venture remains unchecked.
2. Our event nudged Chinese media to publicly challenge Dr. He for the first time on
his DMD research. As a result Dr. He has announced that he will prioritise research
rather than social media promotion.
3. The discussion exposed regulatory and communicative gaps in China which we
hope will receive due attention from relevant authorities. It became apparent in the
discussion that there was no clarity about what type of restrictions Chinese
authorities had imposed on Dr He's research after the CRISPR babies controversy,
and what institutions were responsible for enforcing these restrictions. Chinese
participants have made explicit calls for more regulatory clarity within China.
4. Three university CRISPR scientists, Prof. Shihui Yang, Prof. Li Su and Prof.
Shangxian Xie, shared their diverse views on how bioethical guidelines function (or
fail to function) in everyday research in China.
5. As discussants, bioethicist Prof. Ruipeng Lei and legal scholar Prof. Jiayou Shi
provided a brief review on how bioethical and legislative discussions have shifted in
China since 2018 and speculated on future regulations.
6. ‘Can the Chinese scientists speak?’ Similar to our previous events, we noticed that
Western media bias and Chinese censorship habitually ‘mute’ Chinese scientists.
We believe the best way to demystify ‘Chinese science’ is to enable more ordinary
scientists to have a voice in both domestic and international debates. We hope both
the strengths and limits of our event can inspire more colleagues to improve the
ways we promote critical yet constructive international dialogues.
Our Main Aim
We convened this session because China is an important player in the responsible
development of gene technologies globally, yet how bioethics actually functions in
2

everyday innovation in China may remain elusive. More importantly, little is known about
the state of academic discussion on CRISPR genome editing in China and Chinese
scientists’ views on this. This is why we invited three Chinese CRISPR scientists at
different stages of their careers and with varied experience of policy or public engagement
experience. They were Professor Li Su, Professor Shihui Yang, and Professor Shangxian
Xie.
Another factor that prompted us in organising this session is that we wanted to hear more
voices from ordinary Chinese scientists, and not just a few elites. We were fully aware that
practical constraints and institutional censorship prevented us from hearing more diverse
voices from China. For many (if not the majority of) Chinese academics, speaking to
Western media or speaking publicly in a domestic setting often requires lengthy
institutional approval procedures. Participating in academic events is one of the few
exceptions where Chinese colleagues can express their views publicly and exchange
ideas freely with an international audience. In line with BioGovernance Common’s
commitment to promote inclusive and democratic discussions, we wanted this event to
enable Chinese voices from different levels and from different disciplines. To facilitate the
participation of Chinese academics, we decided to use Chinese as the main language,
with simultaneous translation in English.
Our main aim, as was stated in our event announcement and in communications sent to
participants, has always been to encourage more Chinese scientists and bioethicists to
engage in open dialogue on this important topic both in China and internationally.
Why We Invited Dr. Jiankui He
During the planning of this event, it came to our attention that due to political sensitivity,
China has not yet had an open discussion on CRISPR technology and ethical governance
with Dr. Jiankui He since he announced his illegal experiment with heritable human
genome editing in 2018, for which he was sentenced to three years in prison. However,
since being released, Dr. He has resumed genome research. He has publicly launched an
ambitious plan for his current gene therapy research on Duchenne muscular dystrophy
(DMD) to enter clinical trials by March 2025 and has been actively recruiting patients. As
Dr. He has effectively become a taboo topic within China, most people avoid discussing
him in public. Thus, a pervasive side effect of Chinese censorship is that this has left Dr.
He considerable freedom to self-promote on social media, leaving his claims unchecked
and unchallenged. In planning this event, we’ve consulted a number of key regulators and
academics, and have noticed a shared, yet unspoken, concern that there is no clarity or
transparency over how Dr. He’s research is held accountable.
We consider it is important for Chinese academia to be able to discuss controversial cases
in public. We also consider it critical to have a frank conversation about Dr. He’s current
3

research to understand how accountability is established, and to ensure that the
exploitation of desperate patients and vulnerable individuals will not happen again.
Thus, similar to the other three speakers, we invited Dr. He to give a talk addressing the
theme of the seminar ‘Looking Back into the Future’. That is, we’ve asked all speakers to
look back at their research experience and comment on how ethics and scientific research
can be better integrated and shed light into the future, on what they see as the types of
dialogues or actions needed.
Dr. He accepted our invitation in December 2022. Seventeen hours before the event, we
the organisers learnt from Dr. He’s Twitter account that he was ‘not ready to talk about [his]
experience in the past 3 years.’ We were deeply disappointed by this. But we thought it
would still be a valuable opportunity to provide clarity on his ongoing research with DMD
patients and what has been put in place to ensure such ambitions will be carried out
responsibly and ethically.
We also anticipated that Dr. He may use this event as a publicity stunt and may refuse to
engage with critical questions. However, we considered that given his active recruitment
campaign of DMD patients, having his refusals to clarify key questions recorded in a public
event was also of public interest. We made clear at the beginning of the event, that what is
said and what is left unsaid in the meeting are equally informative.
Our Approach to the Media
Given that Dr. Jiankui He had used the Harvard closed-door event and an invitation from
the University of Oxford to create the false illusion of academic endorsement, we took
extra care of not having this public event hijacked by any individual’s public relation
narrative.
Since the Guardian’s interview with Dr. He was published on 4 February, we’ve received
many media requests around the world to attend this event.
We needed to balance transparency and fairness as well as the practical concerns that the
presence of global media may discourage many Chinese participants from attending. The
approach all four convenors (Ben Ouagrham-Gormley, Lei, Vogel and Zhang) of the
BioGovernance Commons initiative agreed on was to only invite academic journals and
Chinese scholarly media. We thus declined request for attendance from all other media.
As the aim is to promote openness in and with China, we did not impose Chatham House
rule. In fact, we were very clear in communications with all participants that selected
scholarly media would be present. We further reminded participants of this point during the
event.
4

Participants were also informed that we recorded the event only for note-taking purposes,
and that the video would not be shared. Our intention to publish a summary of the event so
that the main points of discussion would be made public knowledge was also made clear
before the event.
A Summary of the Speakers’ Input
Dr. Jiankui He delivered the opening talk. Although we asked the other three speakers to
give 15-minute presentations, we gave Dr. He a 40-minute slot. This was in recognition of
the complicated history of his research, and we wanted to give him sufficient space to
share and elaborate on his plans and his views. At the event, Dr. He’s presentation
‘CRISPR Gene Editing: How Revolutionary Biotechnologies Make Our Lives Better’ lasted
only 25 minutes, which mostly consisted of explaining basic scientific knowledge, such as
the structure of DNA. He spent much time paying tribute to other well-celebrated major
scientific advancements and breakthroughs, before slipping in his own research, of which
Dr. He only talked for 1 minute and 50 seconds. This included confirming that he aimed to
raise 50 million Chinese RMB through charity and enter clinical trial by March 2025. He
mentioned the plan of setting up an international ethics committee for his current lab, but
did not give any specification on its membership, plan or timeline. He was of the view that
society was supportive of using gene editing to cure disease and that the regulations in
both the US and in China should be made clearer. At the end of the presentation, Dr. He
read out the presentation slide that ‘heritable embryo gene editing are not allowed in
human clinical practice, either in China or other countries’. When later pressed by a
professor from Shanghai Jiaotong University if he thought that heritable human genome
editing should be ‘banned’, Dr. He declined to comment.
Prof. Shihui Yang from the School of Life Sciences, Hubei University, was the deputy
head of State Key Laboratory of Biocatalysis and Enzyme Engineering. CRISPR
technology in his research on industrial microbiology. He noted that life scientists’
engagement with bioethics cannot be taken for granted. His interest in engaging with
ethics discussions was mostly propelled by his founding of the Hubei Provincial
Association for Synthetic Biology. He noted that it was scientific journals in China that put
him in contact with bioethicists, and helped him to get access to social science events.
Through his teaching experience both in China and in the US, Prof. Yang pointed out that
drawing science students’ attention to biosecurity and bioethics debates could be a
common challenge in university education, and should be seen as important as developing
cutting-edge technologies. To improve bioethical literacy among Chinese scientists, Prof.
Yang suggested that a stronger presence of bioethical discussions at academic
conferences and international competitions, such as iGEM, may be a more effective way.
He also pointed out the important role international collaboration plays at promoting
bioethical awareness. His final slide summarised his talking points as ‘ABCED’: Attention,
Balance, Collaboration, Discussion, Education.
5

Prof. Li Su from Huazhong University of Science and Technology uses CRISPR in her
cancer research. She agreed with Dr. Jiankui He’s view that any life scientist who doesn’t
know how to apply CRISPR to their research is outdated. While CRISPR may not always
be a ‘necessary’ tool, it is an effective one. Her slides showed past work her team have
published on how biosecurity can be better managed in China and on an innovative
approach they’ve experimented with undergraduate training of biosecurity. Her take on
bioethics is rooted in her commitment on promoting ‘One Health’, which is a collaborative,
multisectoral, and transdisciplinary approach to promote sustainable human and
environmental wellbeing. But Prof. Su also pointed out an often ignored aspect, that is,
there is an equal need for social science students to understand avant-garde science. This
was the rationale for her to introduce the module ‘Modern Life Science Experiment’
specifically for social science students. This point was later echoed by Prof. Shihui Yang
when answering a question at the end of the seminar. Prof Yang pointed out a frustration
that there have been research findings in China that cannot be put into application due to
broad regulations. He called for more scientific literacy of policy makers and regulators, so
that Chinese regulators can have a more differentiated approach that recognises varied
applications and development stages of an innovation.
Prof. Shangxian Xie was also from Huazhong University of Science and Technology and
belongs to a younger generation of Chinese scientists. He uses CRISPR in his
microbiological and animal research. He recounted his misconception of bioethics during
his student years, in which he thought ethics were limited to conceptual debates on
morality and values. It was when he started his PhD study in the US, and when he was
asked to sign forms on bioethics and biosecurity before starting to work in the lab that he
realised ethics had concrete legal implications too. He pointed out that different sub-fields
within science have their own ethical norms and language. While it is not unusual for
scientists to move between research topics or running projects in different sub-areas at the
same time, it cannot be taken for granted that scientists necessarily know what appropriate
ethical procedures they should comply with. One personal anecdote he shared was that as
a scientist who mainly worked with microorganisms, he was well aware of what type of
environmental assessments and protection procedures were needed. So when he applied
for a national grant monitoring changes in mice faeces in relation to microorganism intake,
he did not know a separate ethics review for animal-related research was needed until the
university’s research office rejected his proposal. He pointed out that regional disparity in
ethics assessment and enforcement standards remain a challenge in China. Prof. Xie
emphasised both in his talk and in his answer to participants’ questions of intrinsic conflicts
between science and ethics. He underlined the explorative and future-oriented nature of
science, and contrasted this with the restrictive and history-based characteristics of
bioethics. How to balance these two conflicting forces, for Prof. Xie, was the key
challenge. He suggested that this should be a key task for BioGovernance Commons as
the initiative brings together interdisciplinary and intercultural input.
6

A Summary of the Discussion
We had approximately 40 minutes for discussion. Approximately 2/3 of the questions were
asked by Chinese participants. Given a lack of substance of Dr. Jiankui He’s presentation
and opaqueness of his 2018 scandal, not surprisingly most of the questions were directed
to him. We were disappointed that Dr. He refused to engage in any discussion beyond his
prepared talk. Below is a list of questions that were asked by participants based in and
outside of China:
●Are you restricted in doing any type of research in China?
●Are you restricted from speaking about the research you did from three years ago,
either by the Chinese government, your former university, or the families?
●What kind of concerns do you have moving forward?
●What your thoughts are on communicating with media, rather than bioethicists or
other academic peers, about your research?
●Could you please say more about your current DMD research procedure? Given
this is a disease which may benefit from early interventions, what is your planned
age range of patients?
●Are you restricting your DMD research to somatic gene therapy, or does it
incorporate germline research?
●What’s your plan on making your gene therapy accessible to patients?
●What’s your view on whether human germline editing should be banned?
●What’s your view on China’s subsequent regulations in genome editing? Do you
think it has become more relaxed or more tightened?
●It is expected that China’s Ministry of Science and Technology and the National
Health Commission will promulgate even more guidelines and regulations in this
area. Do you think this is a good thing or a bad thing? Or do you have any comment
on this?
●You’ve mentioned in your talk that China’s governance is not yet comprehensive.
Could you say a bit more about where the regulatory gaps are and how you think
these gaps can be addressed?
●What shapes your understanding of bioethical concerns? Is it through university
education, your training abroad, research culture in China or something else?
To all the questions ask, JKH refused to answer but asked participants to send him their
questions by email. Despite the lack of response from Dr. He, Chinese participants
engaged in the discussion and expressed diverse views. A professor from Shenzhen
expressed the view that the Chinese authorities’ penalty on Dr. He was too harsh. In his
view, there has been an aggravated antagonism between ethicists and scientists in China.
He referred to David Baltimore’s 1975 Asilomar Conference on recombinant DNA as a
model in leading bioethics discussion. This reference provided stark contrast to Dr. Jiankui
He’s refusal to engage in the seminar. Those who are familiar with China’s life sciences
may recall that early contemporary development of Chinese bioethics and biogovernance
were scientist-led. Huizhen Sheng who worked on human-rabbit hybrid embryos and
Huanming Yang who led China’s participation in the Human Genome Project are two key
examples of scientists who led the discussion about bioethics.
7

Weiwei Cao from Shanghai University was ‘upset’ that Dr. He refused to answer any
questions. She said while she admired He’s venturesome courage, she was disappointed
that He made little comment on social values and failed to mention any possible negative
implications of his research on human subjects. She was deeply disappointed that neither
the time in prison nor the bioethical and legal guidance from the wider Chinese academic
community had made him take ethical and social issues more seriously. She asked He to
consider how one small step for one scientist, such as his 2018 heritable human genome
editing experiment, could create significant backlash to his peers and stall the field. Cao
was of the view that contemporary science cannot be developed behind closed doors.
China needs to engage with global dialogues.
Lucy Gao from Chinese Academy of Science said she was able to feel some sincerity from
Dr. He, as he did agree to talk about his work. But she was equally frustrated that nothing
of substance was shared ‘I think he does want to connect with the wider world and have
better exchange,’ said Gao, ‘so I invite him to make more effort in addressing questions
raised by academics and the public.
There were also two longer inputs from Chinese colleagues.
Prof. Ruipeng Lei, who co-chaired the event, provided a brief review of China’s bioethics
discussions on genome editing, chiefly from her personal work experience. She noted a
series of key events. This included 1) the 8th National Bioethical Annual Conference
hosted by Fudan University between 16-18 November 2018. Prof. Lei chaired a session on
potential abusive use of genome editing. This was also the first time she met Jiankui He,
2) the adoption of ‘ethical governance’ into China’s national agenda, through the Central
government’s founding of the National Science and Technology Ethics Committee. 3) A
series of domestic discussions on the protection of genome edited individuals between
January and March 2022. This included a joint bioethics discussion held jointly by
Huazhong University of Science, Renmin University and Technology and Xiamen
University on 13 March 2022. Approximately 138 participants joined the meeting. That was
China’s first open discussion on the bioethics of supporting individuals born through
heritable genome editing. This national meeting was prompted by the 18 March 2022
International Roundtable that was convened by the Centre for Global Science and
Epistemic Justice at the University of Kent, which demanded transparency and democratic
deliberation on this issue. 4) in March 2022, China’s central government promulgated the
‘Guidelines on Enhancing Ethical Governance of Science and Technology’. This has led to
the establishment of a dedicated task force on university education on ethics in science
and technology. 5) In addition to a revised version of the Implementing Rules for Human
Genetic Resources Management, Lei also speculated that a revised and updated version
of the Measures for the Ethical Review of Biomedical Research Involving Humans will also
be published soon. It is expected to be wide in scope, incorporating all research involving
human material or human data. It is also expected to impose similar requirements on
ethical committees and ethical review procedures in hospitals, universities and other
research institutes alike
8

Jiayou Shi, Professor of Law at Renmin University took part in writing Article 1009 of
China’s Civil Code in 2020, which specified that all clinical and scientific research that is
related to human genome and human embryos have to comply with relevant legislation,
administrative rules and guidelines. In 2020, China’s Criminal Law also expanded its
Article 336 that prohibits reproductive genome editing and human cloning. Prof. Shi also
drew attention to an increasing legislative attention to inter-generational fairness in China.
Prof. Shi further commented on Dr. Jiankui He’s remark in his recent Guardian interview
that he acted ‘too quickly’. Shi pointed out that there were different ways to comprehend
what was ‘too quick’: It could be a technical pre-maturity, in which a technology was
applied before its safety and effectiveness was tested. But Shi considered Dr. He acted
‘too quickly’ because he took action before giving his action due ethical consideration.
Looking Back into the Future: The BioGovernance Commons’
Perspective
Looking back at the organisation, delivery and initial perception of this seminar, we found
ourselves at the crossfire of Western biases against Chinese science and China’s
intensified censorship. We had similar experiences with our previous events on biosecurity
and on supporting the individuals born from heritable genome editing.
Since Jiankui He publicised our event through his Guardian interview, we have received
unfounded criticisms from the media and academic peers of rehabilitating He’s reputation,
whitewashing China and tarnishing the reputation of the field of bioethics and
biogovernance. Our main aim of encouraging more Chinese academics to engage in open
dialogue on this important topic both in China and internationally was repeatedly brushed
aside by these criticisms.
For individuals and institutions based in China, to host an open discussion on controversial
issues is often extremely challenging, as concerns over social stability often restrain
discussion. Political sensitivity of the event’s topic also demands a neutral platform. The
BioGovernance Commons initiative is honoured to be a host and enabler for such an
important debate.
We are conscious that participants of this seminar may consider the ‘worthiness’ of
attending such an event differently. Some considered that its worthiness lies in knowing
more about Jiankui He’s past and present scandals, some wanted to know the inner
working of Chinese science and Chinese politics, some were curious to learn global peers’
views. Depending on what one hoped to get out of the seminar, participants may have left
the event feeling informed, enlightened, puzzled, or disappointed.
As organisers, we consider all the efforts worthwhile, as our 150-minute event has helped
minimise the chance of another scandal exploiting desperate patients and vulnerable
individuals. We believe that Chinese scientists’ calls for regulatory clarity at the event is
9

more meaningful than commentaries from global observers. We are delighted that the
event has enabled Chinese media to publicly question Jiankui He’s research and alerted
Chinese authorities to regulatory gaps.
We highlight that avoidance of engaging with controversial cases and individuals may
effectively leave questionable research projects unchecked and unchallenged. Neither
should investigations into controversial cases be shrouded in secrecy or having access to
information as a privilege of a small circle of (political or academic) elites. We hope both
the strengths and limits of our event can inspire more colleagues to improve the ways in
which we promote critical yet constructive international dialogue.
10