Ethics and governance challenges related to genomic data sharing in southern Africa: the case of SARS-CoV-2.

Ethics and governance challenges related to genomic data sharing in southern Africa: the case of SARS-CoV-2.
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DOI:
10.1016/s2214-109x(22)00417-x
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发表时间:
2022-12
影响因子:
34.3
通讯作者:
de Oliveira, Tulio
de Oliveira, Tulio
中科院分区:
医学1区
文献类型:
--
作者:
Moodley, Keymanthri;Cengiz, Nezerith;Domingo, Aneeka;Nair, Gonasagrie;Obasa, Adetayo Emmanuel;Lessells, Richard John;de Oliveira, Tulio

文献摘要

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研究中的数据共享充满了争议。学术上的成功取决于竞争优势,研究团队保护他们的研究成果,直到出版。相比之下,研究资助者通常要求数据共享。除了传统的研究和资金要求外,监测数据也引起了争议。涉及病原体的突发公共卫生事件需要密集的基因组监测工作,并要求在公共利益的基础上迅速分享数据。在这种情况下,及时分享数据就成了科学诚信的问题。在COVID-19大流行期间,基因组病原体数据共享的变革潜力变得显而易见,并推动了关于数据共享的辩论。然而,当omicron(B.1.1.529)变体的基因组测序数据被南部非洲的科学家分享和宣布时,各种挑战出现了,包括旅行禁令。科学、经济和道德影响是灾难性的。然而,旅行限制未能减缓已经在非洲以外国家出现的变异病毒的传播。公众对数据共享的负面影响的看法不利于研究参与者同意在大流行后研究和未来大流行中共享数据的意愿。全球卫生治理组织在制定关于在突发公共卫生事件中负责任地共享基因组病原体数据的指南方面发挥着重要作用。
Data sharing in research is fraught with controversy. Academic success is premised on competitive advantage, with research teams protecting their research findings until publication. Research funders, by contrast, often require data sharing. Beyond traditional research and funding requirements, surveillance data have become contentious. Public health emergencies involving pathogens require intense genomic surveillance efforts and call for the rapid sharing of data on the basis of public interest. Under these circumstances, timely sharing of data becomes a matter of scientific integrity. During the COVID-19 pandemic, the transformative potential of genomic pathogen data sharing became obvious and advanced the debate on data sharing. However, when the genomic sequencing data of the omicron (B.1.1.529) variant was shared and announced by scientists in southern Africa, various challenges arose, including travel bans. The scientific, economic, and moral impact was catastrophic. Yet, travel restrictions failed to mitigate the spread of the variant already present in countries outside Africa. Public perceptions of the negative effect of data sharing are detrimental to the willingness of research participants to consent to sharing data in postpandemic research and future pandemics. Global health governance organisations have an important role in developing guidance on responsible sharing of genomic pathogen data in public health emergencies.