https://www.thehastingscenter.org/chinese-bioethicists-respond-case-jiankui/
By Xiaomei Zhai, Ruipeng Lei, Wei Zhu and Renzong Qiu
A preliminary investigation by Guangdong Province in China of He Jiankui, the scientist who created the world's first gene-edited babies, found that "He had intentionally dodged supervision, raised funds and organized researchers on his own to carry out the human embryo gene-editing intended for reproduction, which is explicitly banned by relevant regulations." As bioethics scholars in China, we would like to comment on the findings, as well as on three commentaries by Jing-Bao Nie and coauthors that appeared in Bioethics Forum, "He Jiankui's Genetic Misadventure" (part 1, part 2, and part 3).
In our opinion, the preliminary investigation is not adequate. First, the announcement of the findings did not mention the invalidity of informed consent that Dr. He obtained. He did not disclose complete information to the human subjects. He asked them to sign a confidential agreement and he committed to pay each couple 280,000 renminbi (about $40,000) which constitutes undue inducement. (See this document, which was taken from Dr. He's website.) These three points made any consent that Dr. He obtained invalid.
Secondly, in 2018 He was given the opportunity to appear on a program of CCTV to promote his so-called third generation of DNA sequencing device. Who gave him such very rare opportunity? Might he have had the support of an interest group with power at the departments of local or central governments? If so, the group should be accountable for its involvement in promoting He's illegal research.
Thirdly, in China, bribery and taking bribes are classified as criminal offenses. Suppose that Dr. He bribed some officials to dodge law or some professionals to fabricate faked documents. If so, he would be faced with criminal allegations. The preliminary investigation doesn't say what crime or crimes Dr. He may have committed. We have to wait for the results of final investigation.
We agree with the criticisms in "He Jiankui's Genetic Misadventure" that Dr. He committed grave wrongdoing without regard for international ethical norms and national regulations. We also agree with the rejection, in part 2, of the assumption that there is a scientific and an ethical divide between China and the West. We would like to make four points about this case and the issues that it raises:
Don't throw the baby out with the bathwater. Statements articulated by several Chinese institutions, including the Genetics Research Branch of the Chinese Genetic Society and the Stem Cell Biology Branch of the Chinese Society of Cell Biology, explicitly or implicitly reject germline genome editing as ethically unacceptable. We think this is throwing the baby out of the bathwater. Dr. He's wrongdoings should not lead to the conclusion that germline genome editing for disease prevention should not be pursued; it is a goal in the Statement of the Organizing Committee, the Second International Summit Meeting on Human Genome Editing in Hong Kong. Germline genome editing for the prevention of genetic diseases ought to be ethically permissible because it could prevent many people from inheriting grave genetic diseases. However, in view of Dr. He's actions and the possible emergence of gene editing used for human reproduction, there should be a moratorium on germline genome editing for human reproduction in China and other countries.
The difference between germline genome editing for disease prevention and for enhancement has crucial moral significance. In our opinion, the difference between germline genome editing for disease prevention and germline genome editing for enhancement has crucial moral significance and requires setting different norms. Even though Dr. He said that his purpose in doing germline genome editing was to prevent transmission of HIV, what he did was enhancement. With germline genome editing for disease prevention, the embryo has a defective gene. On the contrary, with germline editing for enhancement, the embryo is normal; this was the case with the embryos that Dr. He edited.
We cannot categorically reject germline genome editing for enhancement if there are medical reasons, but we should be much more prudent in such cases than with germline genome editing for disease prevention. More importantly with germline editing for enhancement, there are so many more complicated, uncertain, or even unknown factors that may impact the genetic structure and development of an embryo, and these factors would make it more difficult, if not impossible, to assess the risk-benefit ratio of genome editing. Without being able to assess the risks and benefits of genome editing, it would also be difficult, if not impossible, to protect the interests of research volunteers. Risk-benefit information would not be available to them and, therefore, they would not be able to make informed decisions about whether to give consent.
Wild East vs. Wild West. Some commentators consider Dr. He's wrongdoings as evidence of a "Wild East" in scientific ethics or bioethics. This conclusion is not based on facts but on stereotypes and is not the whole story. In the era of globalization, rule-breaking is not limited to the East. Several cases of rule-breaking in research involved both the East and the West. In the notorious case of Golden Rice trials, in which children were used for testing the nutritious effect of genetically modified rice without the consent of their parents, a blatant violation of Chinese rules, the principal culprit was on the faculty of an American university. More recently, in the case of the proposed head transplantation, the initiative also involved a Western scientist. Dr. He studied and worked in elite universities in the United States. Several American scientists and scholars knew of his plan to create gene-edited babies, including an American Nobel Laureate, who objected to the experiment but remained an advisor to one of Dr. He's biotech companies. We should also bear in mind that Dr. He's supervisor, a biophysicist at Rice University, seems to have been involved in the work as he is listed as a coauthor of the paper on the birth of genetically modified twins.
Blaming an authoritative regime on Dr. He's wrongdoings. We have no intention to defend any authoritative regime. However, establishing a causal relation between China's current regime and Dr. He's wrongdoing is not straightforward. We would like to mention that at roughly the same time when Dr. He committed his wrongdoing, other Chinese scientists launched a spacecraft and sent devices to land on the dark side of the Moon. These scientists made this great achievement without violating any laws or policies. Meanwhile, in South Korea, a democratic society, Woo Suk Hwang, a former stem cell scientist at National Seoul University was involved in one of the biggest scientific scandals in modern times. Hwang committed ethical violations by using eggs from his graduate students and from the black market and fabricated data in papers published in high-impact journals.
In our opinion, we should reflect on the prevailing international science culture that puts premium on sensational research and being first. And what should also be blamed is a policy in China that encourages scientists at universities to run businesses and share part of the profits with the universities without sufficient oversight. This policy urges scientists to make quick money without regard for international and national ethical norms. Dr. He had been running eight biotech companies and has collected millions of millions Chinese dollars; how could he have had sufficient energy and time to conscientiously conduct his scientific research?
Blame should also go to hospitals' policies for the promotion of physicians and medical research scientists to the position of physician-in-chief (equivalent to professor) or physician-in-vice-chief (equivalent to associate professor). Applicants must publish several papers in English scientific journals. Many Chinese physicians are not able to write in English and, therefore, seek the help of ghostwriters or their companies which fabricate data or even whole experiments. It is not an excuse for them to commit the fraud, but this policy should be blamed and corrected. For example, the promotion of physicians should depend not on the publication of scientific papers, but only the quality of their medical practices and professionalism.
Xiaomei Zhai, PhD, is a professor at the Center for Bioethics, Chinese Academy of Medical Sciences, Peking Medical College and a Hastings Center Fellow. Ruipeng Lei, PhD, is a professor at the School of the Humanities & Center for Bioethics, Huazhong University of Science and Technology. Wei Zhu, PhD, is an associate professor at Fudan University and a Hastings Center Fellow. Renzong Qiu is a professor at the Institute of Philosophy, Chinese Academy of Social Sciences, and a Hastings Center Fellow.
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Published in: Bioethics, Clinical Trials and Human Subjects Research, Enhancement, Gene Editing, Hastings Bioethics Forum, Human Reproduction
One comment on "Chinese Bioethicists Respond to the Case of He Jiankui"
Bonnie Steinbock on February 8th, 2019 - 4:37pm
I think the authors miss the boat when they write, "We cannot categorically reject germline genome editing for enhancement if there are medical reasons, but we should be much more prudent in such cases than with germline genome editing for disease prevention." Dr. He's editing of the embryos was for disease prevention. The relevant issue is not enhancement vs. disease prevention, but whether this was the only way, or the best way, to prevent disease. Since sperm can be washed to rid it of HIV, why did Dr. He need to edit the embryos, with all of the risks this potentially has?