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.

项目摘要 南部非洲道德数据科学研究（REDSSA）项目的总体目的是生产 关于进行数据科学研究的道德，法律和社会含义（ELSI）的新知识， 为数据科学计划开发基于循证的，上下文的特定指导和治理 例如DS-I非洲，并加强南部非洲负责任的数据科学文化。项目 将分为三个阶段。 第1阶段是研究密集的，将获得有关主要利益相关者有关开发的主要观点的经验数据 数据科学指南，以告知南部非洲DSI-AFRICA研究中心的治理。这个阶段将 从与数据科学相关的ELSI问题进行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平衡 分享。考虑到数字数据通常是由外行公众经历无形和抽象的，该项目将 利用众包作为公民科学的一种形式，以告知创新的教育工具的发展 可以适应DS-I非洲网络中的利益相关者参与数据科学。使用这些工具，我们 将与主要利益相关者进行深入的访谈，以确定他们与Elsi-Data Science的经验 相关挑战，当前指导中的差距及其对指导的程序和实质方面的看法 数据科学治理的发展。从实证研究中出现的关键主题将为我们的基础 DS-1非洲财团中需要的指南，程序和政策共同制定的方法。期间 第1阶段，嵌入在研究中心中的道德顾问将解决新兴的ELSI问题。 在该项目的第二阶段，我们将制定以1阶段研究告知的指导文件，并以最佳方式了解 迄今为止，国际数据科学研究指导，有限的经验和现有文献的实践 关于南部非洲数据科学研究和数据管理的治理。重要的是，这样的 指导将由团结，共享和共同利益的价值观来告知 - 南方的重要概念 基于公共善良的非洲道德框架。这种方法与健康数据生态系统是一致的 这要求不同的利益相关者合作进行健康创新。这些与政策有关的结果 活动将以我们的概念和经验工作中确定的关键关注和原则进行缓解， 将为枢纽中进行的数据科学研究的ELSI提供本地扎根的实用指导。 在项目的第3阶段中，我们旨在扩大影响并增强我们的研究的可持续性，并 治理活动通过创建ELSI网络和通信渠道，专注于数据科学 南部非洲。这将涉及建立ELSI数据科学南部非洲网络（EDSSAN） 回应DS-I非洲研究中心不断发展的ELSI问题，超越了资金期限 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