Public perceptions of international genetic information sharing for biomedical research in China

16 Jan 2025

This GA4GH Public Attitudes for Genomic Policy forum blog post presents a case study that analysed social media posts on Weibo to understand public perceptions in China about international genetic information sharing. The study’s findings explore how different value systems may impact attitudes towards international data sharing.

By Zhangyu Wang*, Meng Wang*, and Li Du*

(*University of Macau)

Incidents involving the unlawful collection of Chinese biological samples by foreign research teams in the 1990s sparked a public debate in China about unauthorised access to the country’s human genetic resources. In response, the Chinese government tightened its legal control over the cross-border transfer of human genetic resources.^[1] Currently, China has implemented stringent legislation concerning personal data protection and genomic data management, which mandates strict requirements for international genomic data sharing. Public sentiments towards these issues could potentially shape China’s future legislative and policy modifications. Nonetheless, there is currently limited knowledge about the public’s perspective on these matters.

Case study conducted to gauge public perspective

In 2023, Nature published “A Pangenome Reference of 36 Chinese Populations” (“the publication”).^[2] The published research incorporated the sampling of “116 high-quality de novo assemblies from 58 core samples representing 36 Chinese ethnic groups and 6 assemblies of the Han Chinese majority.”^[3] Despite being hailed as a significant achievement by Chinese geneticists, with the potential to substantially contribute to Chinese people’s health benefits,^[4] the publication ignited public debate in China about the disclosure and international sharing of Chinese human genomic information for biomedical research purposes.

A case study by Zhangyu Wang, Meng Wang, and Li Du^[5] investigated the public debate sparked by the publication in Nature. The authors focused their analysis on how users of Weibo, a popular Chinese social media platform with a considerable user base, responded to the publication. A content analysis was completed to shed light on the public attitudes towards the publication, identify the reasons behind the users’ positive and negative responses, and examine public perceptions on the legal regulation of genetic information sharing and use in China. This case study offers valuable insights into China’s societal attitudes towards international genetic information sharing for biomedical research purposes.

Case study findings

The investigation revealed that prevailing public sentiments towards the publication were negative, with up to 64% of Weibo microblogs showing negative attitudes, while 18% were positive and 18% were neutral. A stark divergence was found between individual users’ accounts and verified government and media accounts. In contrast to consistent praise of the publication in government accounts, 79.6% of microblogs with negative attitudes were posted by private individuals.

Positive responses centred around: 1) the high quality of the publication in Nature; 2) its scientific significance; and 3) its contributions to genetic data sharing and the expansion of scientific knowledge.

The top three negative responses encompassed: 1) the publication as a betrayal of China; 2) low researcher awareness of the need to protect national security and genetic information security; and 3) researchers’ selfishness in pursuing personal interests through the publication.

In summary, in various social media posts, the benefits of sharing human genomic data related to advancements in disease research and scientific progress. In contrast, concerns focused on potential manipulation and misuse of such data by hostile countries. Specifically, fears were expressed that genomic information released through the publication could be used to produce bioweapons or other harmful tools targeted at the Chinese population.

This case study demonstrates the gap between attitudes of Chinese government authorities and the public towards the cross-border transmission of genomic data for research purposes. Other publications suggest that overly strict legal regulations and misinformation during the COVID-19 pandemic likely contributed towards these pervasive negative sentiments among members of the public.^[6]

The findings also illustrate the role that a collectivistic culture has played in shaping public perceptions toward international data sharing and highlighting their strong concerns about national security and the overall interests of all Chinese people. The prevailing collectivist mindset has likely reinforced the public’s sense of solidarity and their prioritisation of national security considerations.

The study further shows that members of the public commenting on Weibo tend to misunderstand legal regulations governing genomic data management and cross-border sharing and often have insufficient knowledge of relevant biological sciences. Despite the legal responsibilities established by the Biosecurity Law of China,^[7] governmental agencies, official media, and research institutions have not sufficiently educated the public about advances in the biosciences and relevant legal developments.

Recommended next steps

Considering that escalating negative sentiments among the public may increase pressure on scientists and impede long-term policy and legal support for genomic data-related research, the study recommends future investments in public education by governments, researchers, and media. Ultimately, more focused educational outreach would enable more insightful comments and thoughtful recommendations on how to develop a responsible legal framework for international genomic data sharing. The study advocates for prompt official announcements of relevant government approvals on research projects and related genomic data sharing to alleviate potential public fears and misgivings. The construction of an official platform is therefore suggested to strengthen the credibility of official announcements. More guidelines and best practices should also be put in place to assist responsible genomic data sharing and improve communication to the public.

Conclusion

Chinese netizens predominantly oppose international publication of domestic genomic data by local scientists, which emphasise the need to improve public understanding of genetic research, international data sharing, and associated regulations. The discussed case study suggests enhancing policy transparency and security reviews, in addition to establishing an official platform for timely release approvals on research programs and accompanied cross-border data sharing.

References

[1] Chu J. Research and management of human genetic resources in China. Science. 2022;72:5–10 (Original in Chinese); Kang W. The right to genetic information disclosure: commercial exploitation of human genes and benefit-sharing. J Anhui Univ (Philos Soc Sci Ed). 2014;38(2):130–40 (Original in Chinese).

[2] Gao Y, Yang X, Chen H, et al. A pangenome reference of 36 Chinese populations. Nature. 2023;169:112-21. doi: 10.1038/s41586-023-06173-7.

[3] China Science Daily. Completing the Chinese “Puzzle”: Nature publishes a pangenome reference map of Chinese populations (Original in Chinese). 2023. https://news.sciencenet.cn/htmlnews/2023/6/502872.shtm. Accessed 7 Oct 2024.

[4] CCTV NEWS. What are the Chinese “exclusive codes” in the pan-genome map? This “first map” will give you the answer (Original in Chinese). 2023. https://news.cctv.com/2023/06/15/ARTIJJmEUCdr49OMeWgchOVL230615.shtml. Accessed 7 Oct 2024.; Caixin Media. Chinese pan-genome mapping on Nature draws controversy: should genetic data be shared or not? (Original in Chinese). 2023. https://zhishifenzi.blog.caixin.com/archives/268744. Accessed 7 Oct 2024.

[5] Wang Z, Wang M, Du L. Public perceptions of international genetic information sharing for biomedical research in China: a case study of the social media debate on the article “A Pangenome Reference of 36 Chinese Populations” published in Nature. Human Genomics. 2024;18(1): 86. doi: 10.1186/s40246-024-00650-4.

[6] Allington D, Duffy B, Wessely S, Dhavan N, Rubin J. Health-protective behaviour, social media usage and conspiracy belief during the COVID-19 public health emergency. Psychological Medicine. 2021;51(10):1763-9. doi: 10.1017/S0033291721000593; Jia H, Luo X. I wear a mask for my country: conspiracy theories, nationalism, and intention to adopt COVID-19 prevention behaviors at the later stage of pandemic control in China. Health Communication. 2023;38(3):543-51. doi: 10.1080/10410236.2021.1958982.

[7] The Chinese Biosecurity Law mandates government agencies, universities, and news media to publicize and popularize biosecurity laws, regulations, and general knowledge of biosecurity. See: Standing Committee of the National People’s Congress of China. Biosecurity Law of the People’s Republic of China (Original in Chinese). 2021. https://www.gov.cn/xinwen/2020-10/18/content_5552108.htm. Accessed 7 Oct 2024.