In this study, we provide a close examination of Weibo users’ comments on the publication of Chinese gene-sequencing data in a prestigious international scientific journal, including their attitudes towards this Publication Activity, reasons behind their opinions, and laypersons’ perceptions regarding the protection of human genetic resources. We have identified several major considerations emerging from our findings that are relevant to and could potentially impact the reform of Chinese human genetic information management in China.
Divergent perspectives between government and individual users
An important finding is that authenticated government accounts did not express any negative attitudes toward the Publication Activity. The positive perspectives signify the Chinese government’s willingness to share genetic information and their endorsement of the principle of open science. Conversely, microblogs from individual Weibo users typically exhibited more negative attitudes towards the Publication Activity, primarily motivated by concerns that the disclosure of genetic information could potentially jeopardize Chinese national security. This discrepancy suggests that the public may have misconceptions about the sharing of human genetic data. There are two major reasons that may account for these negative public attitudes. First, the distinct value of genetic information has been defined by the established laws. For instance, the 2021 Personal Information Protection Law (hereinafter referred to as “the PIPL”) categorized genetic information as sensitive data, and the 2021 Biosecurity Law regulated it as an essential element in preserving national security. Secondly, amidst the COVID-19 pandemic, there were popular beliefs that SARS-CoV-2 was purposely developed by the West to target the genetics of the Chinese population [23, 24]. This may have amplified public distrust and dissent on issues concerning the international publication of Chinese human genetic information. Consequently, our study emphasizes the harmful influence of misinformation on the public’s trust in scientists.
Impact of a culture emphasizing collective interests
In our analysis, Weibo users with negative attitudes preferred to identify themselves as parts of the Chinese population, rather than as individuals potentially affected by the data disclosure in the Publication Activity. As demonstrated by microblogs, less than 2% of microblogs (n = 6) discussed the issue of personal data protection and privacy violations that the Publication Activity may bring. Previous analyses of Chinese legal culture have indicated that the preservation of individual privacy in China should consider the “collective interests of the nation and society, equitable distribution of benefits from data flow among social actors, and special protection for vulnerable groups, to maintain legal and moral integrity [25, 26].” Therefore, Weibo users’ tendency to downplay individual privacy and personal information safety while prioritizing national security, is consistent with traditional Chinese values and approaches shaped by a collectivist culture [27,28,29]. More specifically, the prevailing collectivist mindset typically heightens Weibo users’ sense of solidarity and their concerns about national security risks to the entire Chinese population, often prioritizing such considerations over individual privacy and information sharing.
Knowledge gaps regarding the regulation of genetic information
Our research indicates that Weibo users may have limited knowledge of how genetic information is regulated in China. For instance, cross-border genetic data transfer is primarily governed by both the PIPL and the Administrative Regulations on Human Genetic Resources (hereinafter referred to as “HGR Regulations”), but no microblogs mentioned these laws when discussed legal issues related to the Publication Activity. Moreover, laypersons’ inaccurate perceptions of the regulatory context could be the driver of their negative attitudes. For example, 68% of all microblogs containing legal appraisals suggested that the Publication Activity intended to evade the newly introduced Implementing Rules. However, contrary to public perceptions, the Implementing Rules did not establish new conditions for international collaborations using Chinese human genetic sources; rather, it merely explained situations that could trigger security review by the MOST, a legal regime that had already been outlined in the Biosecurity Law and HGR Regulations. Besides, institutions associated with the Publication Activity, such as Fudan University, clearly stated on their official websites that the research and associated genetic data sharing had been approved by the MOST. However, the approval from the MOST was rarely mentioned by Weibo users, with merely one microblog stating this procedure.
Additionally, only one Weibo user from the legal sector, authenticated by Weibo as an SMI (a deputy director at a Judges’ Training Institute), participated in the discussion. Nevertheless, the microblog did not present legal arguments, but rather speculated on the connection between genetic information disclosure and bioweapons and biowarfare. The limited participation of legal professionals in social media discussions on such issues is not helpful for correcting widespread misconceptions about regulations on human genetic resources. Without a timely response from legal experts, misconceptions about the disclosure of human genetic information are likely to shape the public debate on Weibo.
The Biosecurity Law mandates government agencies, universities, and news media to publicize and popularize biosecurity laws, regulations, and general knowledge of biosecurity [30]. However, gaps in laypersons’ knowledge concerning the regulatory environment for genetic information, established by our study, suggest that governmental agencies, official media, and research institutions have not efficiently communicated accurate biosecurity and legal knowledge to the public.
Advocating for a better public education on biosecurity and related legal issues
Strong negative public attitudes towards genetic data sharing could exert pressure on scientists in the process of their research work and the development of research outputs. Public opposition could also impact the enforcement of laws and policies related to genetic data sharing and biotechnology research, thereby impeding international research collaborations that legitimately utilize China’s genetic data resources. In the long run, such biased public attitudes can have lasting influence on framing new legal regulations and policies adaptive to societal needs and development, since the power of public sentiments, as we mentioned earlier in the Anhui incident and He Jiankui gene-editing case, fairly amounts to be a driving force [31].
Our analysis highlights the need for future efforts by researchers, media, and governments to increase scientific literacy and better educate the public about benefits and risks associated with biomedical research utilizing human genetic information. Previous studies have demonstrated that after research participants learned more about biomedical research, their trust in biobanks and willingness to donate individual biospecimens increased significantly [32]. Sound public education would enable the public to accurately understand legitimate research activities while remaining alert to unauthorized ones [32,33,34]. It would also encourage their engagement in more research initiatives, fostering a favourable research environment. Educational outreach would prepare the public to provide insightful comments and recommendations on future legislations and policies regarding genetic data sharing. This would prevent misunderstandings and calm public fears which have the potential to further exacerbate China’s already stringent legal regimes. Ultimately, negative public attitudes could impede the development of a more permissive and more responsible legal framework for international sharing of genetic data for research purposes.
In the present case, the announcement concerning the research authorization and legal compliance for publishing human gene-sequencing data could have been clearly articulated on the official websites of Fudan University and Xi’an Jiaotong University [35]. It would also have been helpful if official statements from governmental agencies or research institutions were promptly issued to dispel widespread public scepticism and concerns. As a further step, in order to encourage positive and supportive public attitudes towards genetic data sharing and biomedical research, it would be practical to establish an official platform to publicize information about authorized research projects. This could include best practices in genetic data sharing that comply with the regulatory requirements. Detailed guidelines for public communication could enhance the performance of this official platform.
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