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.

IF 3.8 3区 医学 Q2 GENETICS & HEREDITY
Zhangyu Wang, Meng Wang, Li Du
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引用次数: 0

Abstract

Background: The international disclosure of Chinese human genetic data continues to be a contentious issue in China, generating public debates in both traditional and social media channels. Concerns have intensified after Chinese scientists' research on pangenome data was published in the prestigious journal Nature.

Methods: This study scrutinized microblogs posted on Weibo, a popular Chinese social media site, in the two months immediately following the publication (June 14, 2023-August 21, 2023). Content analysis was conducted to assess the nature of public responses, justifications for positive or negative attitudes, and the users' overall knowledge of how Chinese human genetic information is regulated and managed in China.

Results: Weibo users displayed contrasting attitudes towards the article's public disclose of pangenome research data, with 18% positive, 64% negative, and 18% neutral. Positive attitudes came primarily from verified government and media accounts, which praised the publication. In contrast, negative attitudes originated from individual users who were concerned about national security and health risks and often believed that the researchers have betrayed China. The benefits of data sharing highlighted in the commentaries included advancements in disease research and scientific progress. Approximately 16% of the microblogs indicated that Weibo users had misunderstood existing regulations and laws governing data sharing and stewardship.

Conclusions: Based on the predominantly negative public attitudes toward scientific data sharing established by our study, we recommend enhanced outreach by scientists and scientific institutions to increase the public understanding of developments in genetic research, international data sharing, and associated regulations. Additionally, governmental agencies can alleviate public fears and concerns by being more transparent about their security reviews of international collaborative research involving Chinese human genetic data and its cross-border transfer.

中国公众对生物医学研究中国际遗传信息共享的看法:关于《自然》杂志上发表的《36 个中国种群的庞基因组参考》一文的社交媒体辩论的案例研究。
背景:在中国,中国人类基因数据的国际公开仍然是一个有争议的问题,在传统和社交媒体渠道上都引发了公众辩论。在中国科学家关于庞基因组数据的研究发表在著名期刊《自然》(Nature)上后,人们的担忧加剧了:本研究仔细研究了紧随论文发表后两个月内(2023 年 6 月 14 日至 2023 年 8 月 21 日)在中国流行的社交媒体网站微博上发布的微博。研究对微博内容进行了分析,以评估公众反应的性质、持积极或消极态度的理由,以及用户对中国如何规范和管理中国人类遗传信息的总体认识:结果:微博用户对文章公开披露庞基因组研究数据的态度截然不同,18%持肯定态度,64%持否定态度,18%持中立态度。积极态度主要来自经核实的政府和媒体账户,他们对该出版物表示赞赏。与此相反,负面态度主要来自个人用户,他们担心国家安全和健康风险,通常认为研究人员背叛了中国。评论中强调的数据共享的好处包括疾病研究的进步和科学进步。约 16% 的微博指出,微博用户误解了有关数据共享和管理的现行法规和法律:根据我们的研究,公众对科学数据共享的态度主要是负面的,因此我们建议科学家和科研机构加强宣传,提高公众对基因研究的发展、国际数据共享和相关法规的了解。此外,政府机构可以通过对涉及中国人类基因数据的国际合作研究及其跨境转移进行更透明的安全审查,减轻公众的恐惧和担忧。
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来源期刊
Human Genomics
Human Genomics GENETICS & HEREDITY-
CiteScore
6.00
自引率
2.20%
发文量
55
审稿时长
11 weeks
期刊介绍: Human Genomics is a peer-reviewed, open access, online journal that focuses on the application of genomic analysis in all aspects of human health and disease, as well as genomic analysis of drug efficacy and safety, and comparative genomics. Topics covered by the journal include, but are not limited to: pharmacogenomics, genome-wide association studies, genome-wide sequencing, exome sequencing, next-generation deep-sequencing, functional genomics, epigenomics, translational genomics, expression profiling, proteomics, bioinformatics, animal models, statistical genetics, genetic epidemiology, human population genetics and comparative genomics.
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