PDF(Pubmed)
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.
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.
摘要：
背景：中国人类基因数据的国际披露在中国仍然是一个有争议的问题，在传统和社交媒体渠道进行公开辩论。在中国科学家对pangenome数据的研究发表在著名的《自然》杂志上之后，人们的担忧加剧了。
方法：本研究仔细研究了微博上的微博，一个受欢迎的中国社交媒体网站，在发布后的两个月内（2023年6月14日至2023年8月21日）。进行了内容分析，以评估公众回应的性质，积极或消极态度的理由，以及用户对中国人类基因信息如何在中国受到监管和管理的总体了解。
结果：微博用户对文章公开披露的pangenome研究数据表现出截然不同的态度，18%为阳性，64%阴性,18％中立。积极的态度主要来自经过验证的政府和媒体账户，称赞该出版物。相比之下,消极的态度源于个人用户，他们担心国家安全和健康风险，并经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和科学进步的进步。大约16％的微博表示，微博用户误解了有关数据共享和管理的现有法规和法律。
结论：基于我们的研究确立的公众对科学数据共享的主要负面态度，我们建议科学家和科学机构加强宣传，以增加公众对基因研究发展的了解，国际数据共享,和相关法规。此外,政府机构可以通过对涉及中国人类基因数据及其跨境转移的国际合作研究进行更透明的安全审查来减轻公众的担忧和担忧。
方法：本研究仔细研究了微博上的微博，一个受欢迎的中国社交媒体网站，在发布后的两个月内（2023年6月14日至2023年8月21日）。进行了内容分析，以评估公众回应的性质，积极或消极态度的理由，以及用户对中国人类基因信息如何在中国受到监管和管理的总体了解。
结果：微博用户对文章公开披露的pangenome研究数据表现出截然不同的态度，18%为阳性，64%阴性,18％中立。积极的态度主要来自经过验证的政府和媒体账户，称赞该出版物。相比之下,消极的态度源于个人用户，他们担心国家安全和健康风险，并经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和科学进步的进步。大约16％的微博表示，微博用户误解了有关数据共享和管理的现有法规和法律。
结论：基于我们的研究确立的公众对科学数据共享的主要负面态度，我们建议科学家和科学机构加强宣传，以增加公众对基因研究发展的了解，国际数据共享,和相关法规。此外,政府机构可以通过对涉及中国人类基因数据及其跨境转移的国际合作研究进行更透明的安全审查来减轻公众的担忧和担忧。
