Expanding the CRISPR Conversation

In “Lessons From the He Jiankui Incident” (Issues, Summer 2019), Xiaomei Zhai, Ruipeng Lei, and Renzong Qiu call for a regulatory system that would involve governmental authority as well as oversight from the research community. They make a compelling case that self-regulation by researchers is not sufficient to curb rogue scientists from embarking on risky investigations, such as the germline experiment the Chinese researcher He Jiankui conducted. I agree that a “bottom-up” approach is needed in addition to the “top-down” system of government regulation. The authors mention political leaders, researchers, humanities and social science scholars, and public stakeholders as necessary participants in this process.

More needs to be said about the “public stakeholders.” Zhai, Lei, and Qiu do not elaborate on this suggestion; it is not clear in their account whether ordinary citizens count as stakeholders. I contend that they should be. How, then, should members of the public be chosen for involvement in oversight of emerging science and technology? Given the highly technical aspects of much cutting-edge research, what kind of scientific background—if any—should such public stakeholders have? The same questions could be asked about the political leaders and humanities and social science scholars the authors mention as participants in the bottom-up oversight they recommend. As a past member of multidisciplinary bodies at the institutional, national, and international levels during my long career in bioethics, I am confident that thoughtful, dedicated members of the public can acquire the necessary knowledge to be useful members of such committees. Would it be best to have a semipermanent body, such as the national bioethics commissions that exist in many countries today? Should ad hoc committees be formed for each new scientific endeavor that requires such oversight? These and other questions deserve careful scrutiny and an examination of existing models of public engagement.

Zhai, Lei, and Qiu mention a critical element in this process: the need to be alert to potential conflicts of interest. This is obvious in the case of scientists who are directly involved in research and experimentation. But it can also be true of members of the public. For example, in North America patient advocacy organizations often receive financial support from the pharmaceutical industry. As has been noted elsewhere, neither the industry nor advocacy organizations are required to fully and routinely disclose their financial ties. A robust system is needed to prevent the appointment of individuals who have conflicts of interest to serve on the proposed bottom-up bodies to oversee gene editing. It is not sufficient simply to require disclosure of conflicts; individuals with such conflicts should be disallowed as members.

Many details have to be put in place to realize the forward-looking recommendations the three Chinese professors propose. But their article is a good start in a much-needed direction.

Ruth Macklin

The article by the Chinese bioethicists Xiaomei Zhai, Ruipeng Lei, and Renzong Qiu on the use of CRISPR to genetically modify the germline DNA of human babies offers an important perspective on regulating this emerging technology. But it represents only a narrow, elite view of what transpired and what human gene editing might mean in China. A broader spectrum of perspectives on the He Jiankui incident is available for those willing to look.

To wit, the first few months following He’s announcement witnessed publication of a large number of articles about the event by Chinese scholars not directly involved in the biomedical field. Duan Weiwen of the Chinese Academy of Social Sciences, for example, argued that the event reveals weaknesses in bioethics. And Tian Song of Beijing Normal University pointed out that the event provides an opportunity for society to develop appropriate legal mechanisms to protect society from possible harms from science.

What is even more remarkable, however, is the extent to which the public immediately became involved in responding to and thinking about human germline engineering. The “public” here refers primarily to Chinese internet users, or “netizens,” since the attitude of offline people is difficult to obtain, and Chinese people increasingly access scientific and technological information through internet searches.

Some commentators have speculated that netizen discussions of the gene-edited babies event suggest a watershed in Chinese public attitudes toward science: from overwhelmingly positive to increasingly doubtful and questioning. A sample of messages posted on CCTV news point in this direction: “If [genes] can be edited casually, it is a potential threat to the natural development of mankind.” “It’s as if … Pandora’s box has been opened.” “Scientific research does need to be based on ethics and law. Technology without ethical and legal foundations is not a blessing but a disaster!”

Weibo, a popular microblogging platform, is the primary channel through which netizens express opinions in China. Postings there reveal a nuanced discussion about the gene-edited babies event. Here it is possible to identify four different types of comments: those criticizing the scientists (“shameless”); those supporting the scientists (“The Chinese also treated the railway like this more than 100 years ago”); those criticizing the government (“How come there’s no more to come out of this? What about the results?”); and those supporting the government (“The results of the investigation prove that the research results released by He Jiankui are … prohibited by the state”).

Despite a range of participants discussing the gene-edited baby event, one stakeholder that has been conspicuously marginalized, both in China and abroad, is that of the Bai hualin (White birch forest organization), a charity foundation for AIDS patients. According to paperwork for He Jiankui’s project, Bai hualin was the institution from which He recruited couples for gene editing. After reviewing information provided by He, the public welfare organization screened out volunteers who did not meet his protocol requirements and then, with their consent, introduced 50 people to him. Although questions have been raised about the degree of informed consent, as far as we can determine no serious effort has been made to solicit views from this organization or its clientele.

One can undertake ex ante and ex post assessments of the gene-edited babies event. Ex ante, the gene editing was clearly deficient in taking all stakeholders into account. Ex post, however, it seems reasonable to argue that a range of stakeholders, including government, academics, media, and the public, have participated in critical discussions. Although they have made different contributions to the emerging assessment in China, there has in fact been a broad participation of multiple stakeholders—broader, we suggest, than has been the case with regard to this particular issue outside China.

Yan Ping

Carl Mitcham