Research for Ethical Data Science in Southern Africa (REDSSA)

南部非洲伦理数据科学研究 (REDSSA)

• 批准号: 10683345
• 负责人: Keymanthri Moodley
• 金额: $ 39.4万
• 依托单位: STELLENBOSCH UNIVERSITY
• 依托单位国家: 美国
• 财政年份: 2021
• 资助国家: 美国
• 起止时间: 2021-09-15 至 2026-07-31
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/10683345
• 关键词: Advisory Committees; Africa; Africa South of the Sahara; African; Artificial Intelligence; Behavioral Research; Big Data; Bioethics; Bioethics Consultants; Biomedical Research; Collaborations; Communication; Communities; Competence; Computing Methodologies; Consensus; Consultations; Country; Creativeness; Data; Data Collection; Data Protection; Data Science; Data Set; Development; Devices; Disease; Education; Empirical Research; Ensure; Ethical Analysis; Ethicists; Ethics; Ethics Consultation; Face; Funding; Guidelines; Health; Health Promotion; Health Sciences; Health system; Healthcare; High Prevalence; Income; Individual; Institution; International; Intervention; Interview; Justice; Knowledge; Laws; Life; Literature; Machine Learning; Methodology; Mission; Modeling; Morals; Penetration; Phase; Phenotype; Policies; Population; Procedures; Public Health; Recording of previous events; Records; Research; Research Ethics; Research Project Grants; Research Project Summaries; Sampling; Services; Social Sciences; South Africa; Southern Africa; Structure; Technology; Three-Dimensional Imaging; Transfer Agreement; Trust; Work; citizen science; cloud storage; commune; community engagement; complex data; computerized data processing; crowdsourcing; data access; data ecosystem; data exchange; data framework; data literacy; data management; data sharing; deep learning; digital; empowerment; ethical, legal, and social implication; evidence base; experience; health care delivery; health data; health inequalities; health science research; improved; innovation; insight; legal implication; open data; population health; public health ethics; public health intervention; public health research; public trust; responsible research conduct; social implication; solidarity; symposium; tool

PROJECT SUMMARY The Research for Ethical Data Science in Southern Africa (REDSSA) project has the overall aims of producing new knowledge in regard to the ethical, legal and social implications (ELSI) of conducting data science research, to develop evidence-based, context specific guidance for the conduct and governance of data science initiatives such as DS-I Africa, and to strengthen the culture of responsible data science in Southern Africa. The project will be conducted in three phases. Phase 1 is research intensive and will obtain empirical data on key stakeholder views regarding the development of data science guidance to inform governance of DSI-Africa Research Hubs in Southern Africa. This phase will start with conceptual research and normative analysis of the ELSI issues related to data science. Important concepts to explore will include data sovereignty where data protection is balanced with responsible data sharing. Given that digital data is often experienced as intangible and abstract by the lay public, the project will employ crowdsourcing as a form of citizen science to inform the development of innovative educational tools that could be adapted for stakeholder engagement in data science in the DS-I Africa network. Using these tools, we will conduct in-depth interviews with key stakeholders to ascertain their experiences with ELSI-data science related challenges, gaps in current guidance and their views on procedural and substantive aspects of guidance development in data science governance. Key themes that emerge from the empirical research will underpin our approach to co-creation of guidelines, procedures and policies required in the DS-I Africa consortium. During phase 1, ethics consultants embedded in the Research Hubs will address emerging ELSI concerns. In Phase 2 of this project, we will develop guidance documents informed by phase 1 research and by best practices in international data science research guidance, the limited experience and existing literature to date concerning data science research and governance of data management in Southern Africa. Importantly, such guidance will be informed by the values of solidarity, sharing and mutual benefit - important concepts in Southern African moral frameworks based on communal good. This approach is congruent with health data ecosystems that require different stakeholders to work collaboratively for health innovation. The results of these policy-related activities will be tempered with key concerns and principles identified in our conceptual and empirical work and will provide locally grounded, practical guidance on the ELSI of data science research conducted in the hubs. In Phase 3 of the project, we aim to amplify the impact and enhance the sustainability of our research and governance activities by creating ELSI networks and communication channels focusing on data science in Southern Africa. This will involve establishing an ELSI Data Science Southern African Network (EDSSAN) to respond to evolving ELSI concerns in DS-I Africa Research Hubs beyond the funding period, hosting annual conferences, and leveraging existing local networks.

项目概要 南部非洲道德数据科学研究 (REDSSA) 项目的总体目标是 关于进行数据科学研究的道德、法律和社会影响（ELSI）的新知识， 为数据科学举措的实施和治理制定基于证据的、针对具体情况的指南 例如 DS-I Africa，并加强南部非洲负责任的数据科学文化。项目 将分三个阶段进行。 第一阶段是研究密集型阶段，将获得主要利益相关者对开发的看法的经验数据 数据科学指导，为南部非洲的 DSI-非洲研究中心的治理提供信息。这一阶段将 从与数据科学相关的 ELSI 问题的概念研究和规范分析开始。重要的 要探索的概念将包括数据主权，其中数据保护与负责任的数据相平衡 分享。鉴于数字数据通常被公众视为无形和抽象的，该项目将 利用众包作为公民科学的一种形式，为创新教育工具的开发提供信息， 可以适应利益相关者参与 DS-I 非洲网络中的数据科学。使用这些工具，我们 将与主要利益相关者进行深入访谈，以确定他们在 ELSI 数据科学方面的经验 当前指南中的相关挑战、差距以及他们对指南的程序和实质性方面的看法 数据科学治理的发展。实证研究中出现的关键主题将支撑我们 DS-I 非洲联盟所需的共同制定指南、程序和政策的方法。期间 第一阶段，研究中心的道德顾问将解决新出现的 ELSI 问题。 在该项目的第二阶段，我们将根据第一阶段的研究和最佳实践制定指导文件 国际数据科学研究指导实践、迄今为止有限的经验和现有文献 关于南部非洲的数据科学研究和数据管理治理。重要的是，这样的 团结、分享和互利的价值观将成为指导方针——南方国家的重要理念 基于公共利益的非洲道德框架。这种方法与健康数据生态系统一致 这需要不同利益相关者共同努力促进健康创新。这些政策相关的结果 活动将根据我们在概念和实证工作中确定的关键问题和原则进行调整 将为在中心进行的数据科学研究的 ELSI 提供立足本地的实用指导。 在该项目的第三阶段，我们的目标是扩大影响并增强我们研究和研究的可持续性 通过创建专注于数据科学的 ELSI 网络和沟通渠道来开展治理活动 南部非洲。这将涉及建立 ELSI 数据科学南部非洲网络 (EDSSAN) 响应 DS-I 非洲研究中心在资助期之后不断变化的 ELSI 问题，举办年度 会议，并利用现有的本地网络。

项目成果

Artificial intelligence (AI) or augmented intelligence? How big data and AI are transforming healthcare: Challenges and opportunities.

人工智能 (AI) 还是增强智能？

• DOI: 10.7196/samj.2024.v114i1.1631
• 发表时间: 2023
• 期刊: South African medical journal = Suid-Afrikaanse tydskrif vir geneeskunde
• 作者: Moodley,K

The regulation of health data sharing in Africa: a comparative study.

• DOI: 10.1093/jlb/lsad035
• 发表时间: 2024-01
• 期刊: JOURNAL OF LAW AND THE BIOSCIENCES
• 影响因子: 3.4
• 作者: McKay, Annelize G. Nienaber;Brand, Dirk;Botes, Marietjie;Cengiz, Nezerith;Swart, Marno
• 通讯作者: Swart, Marno

Correction to Lancet Glob Health 2022; 10: e1855-59.

对《Lancet Glob Health 2022》的更正；

• DOI: 10.1016/s2214-109x(22)00508-3
• 发表时间: 2023
• 期刊: The Lancet. Global health

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

• DOI: 10.1016/s2214-109x(22)00417-x
• 发表时间: 2022-12
• 期刊: LANCET GLOBAL HEALTH
• 影响因子: 34.3
• 作者: Moodley, Keymanthri;Cengiz, Nezerith;Domingo, Aneeka;Nair, Gonasagrie;Obasa, Adetayo Emmanuel;Lessells, Richard John;de Oliveira, Tulio
• 通讯作者: de Oliveira, Tulio