Data sharing governance in sub-Saharan Africa during public health emergencies: Gaps and guidance
Data sharing governance in sub-Saharan Africa during public health emergencies: Gaps and guidance
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DOI：
10.17159/sajs.2022/13892
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发表时间：
2022-12-01
影响因子：
2.4
通讯作者：
Moodley, Keymanthri
中科院分区：
文献类型：
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作者：
Brand, Dirk;Singh, Jerome A.;Moodley, Keymanthri
尽管自二零一九年底以来，COVID-19大流行引起了全球社会的关注，但致命的健康流行病对非洲来说并不新鲜。肺结核、疟疾和人体免疫缺陷病毒（艾滋病毒）是对非洲大陆造成灾难性影响的其他严重疾病之一。有效应对此类流行病需要高质量、全面的数据集，这些数据集可以为政策制定提供信息，并加强医疗保健决策。虽然数据正在推动21世纪的信息经济，但非洲缺乏精心策划的大型流行病学数据来源和分析能力，无法快速识别和了解新出现的传染病，这对及时应对正在发生的流行病构成了重大挑战。各国之间的数据访问、共享和转移对于有效管理当前和未来的卫生流行病至关重要。然而，数据访问和共享提出了以下问题：个人隐私、监管跨境数据流动的治理机制是否充分，以及为公共卫生利益收集和使用个人数据方面的道德问题。撒哈拉以南非洲研究最密集的国家的特点是多样化的数据管理和隐私治理框架。这种区域差异可能会阻碍对时间敏感的数据共享，并强调迫切需要进行治理改革，以促进有效的决策，以应对迅速变化的公共卫生threatens.Significance：我们探讨治理的考虑因素，应该适用于收集，传输和使用公共卫生突发事件中的数据。具体来说，我们概述了选定非洲国家普遍存在的数据共享治理格局。在此过程中，我们确定了阻碍有效数据整理、共享和分析的限制和差距。这项工作可以在一系列利益相关者中找到效用，包括生物信息学家，流行病学家，人工智能编码员和政府决策者。虽然这项工作主要侧重于非洲的情况，但所探讨的问题是普遍关切的问题，因此与更广泛的国际受众有关。
While the COVID-19 pandemic has captured the attention of the global community since the end of 2019, deadly health pandemics are not new to Africa. Tuberculosis (TB), malaria and human immunodeficiency virus (HIV) count amongst other serious diseases that have had a catastrophic impact on the African continent. Effective responses to such pandemics require high-quality, comprehensive data sets that can inform policymaking and enhance healthcare decision-making. While data is driving the information economy in the 21st century, the scarcity in Africa of carefully curated, large epidemiologic data sources and analytical capacity to rapidly identify and understand emerging infectious diseases poses a major challenge to mounting a time-sensitive response to unfolding pandemics. Data access, sharing and transfer between countries are crucial to effectively managing current and future health pandemics. Data access and sharing, however, raises questions about personal privacy, the adequacy of governance mechanisms to regulate cross-border data flows, and ethical issues relating to the collection and use of personal data in the interests of public health. Sub-Saharan Africa's most research-intensive countries are characterised by diverse data management and privacy governance frameworks. Such regional variance can impede time-sensitive data sharing and highlights the need for urgent governance reforms to facilitate effective decision-making in response to rapidly evolving public health threats.Significance: We explore governance considerations that ought to apply to the collection, transfer, and use of data in public health emergencies. Specifically, we provide an overview of the prevailing data sharing governance landscape in selected African countries. In doing so, we identify limitations and gaps that impede effective data collation, sharing and analysis. This work could find utility amongst a range of stakeholders, including bioinformaticians, epidemiologists, artificial intelligence coders, and government decision-makers. While this work focuses primarily on an African context, the issues explored are of universal concern and therefore of relevance to a broader international audience.