PDF(Pubmed)
Abstract：
BACKGROUND: Several factors thwart successful data sharing-ambiguous or fragmented regulatory landscapes, conflicting institutional/researcher interests and varying levels of data science-related expertise are among these. Traditional ethics oversight mechanisms and practices may not be well placed to guarantee adequate research oversight given the unique challenges presented by digital technologies and artificial intelligence (AI). Data-intensive research has raised new, contextual ethics and legal challenges that are particularly relevant in an African research setting. Yet, no empirical research has been conducted to explore these challenges.
METHODS: We explored REC members\' views and experiences on data sharing by conducting 20 semi-structured interviews online between June 2022 and February 2023. Using purposive sampling and snowballing, we recruited representatives across sub-Saharan Africa (SSA). We transcribed verbatim and thematically analysed the data with Atlas.ti V22.
RESULTS: Three dominant themes were identified: (i) experiences in reviewing data sharing protocols, (ii) perceptions of data transfer tools and (iii) ethical, legal and social challenges of data sharing. Several sub-themes emerged as: (i.a) frequency of and approaches used in reviewing data sharing protocols, (i.b) practical/technical challenges, (i.c) training, (ii.a) ideal structure of data transfer tools, (ii.b) key elements of data transfer tools, (ii.c) implementation level, (ii.d) key stakeholders in developing and reviewing a data transfer agreement (DTA), (iii.a) confidentiality and anonymity, (iii.b) consent, (iii.c) regulatory frameworks, and (iii.d) stigmatisation and discrimination.
CONCLUSIONS: Our results indicated variability in REC members\' perceptions, suboptimal awareness of the existence of data protection laws and a unanimously expressed need for REC member training. To promote efficient data sharing within and across SSA, guidelines that incorporate ethical, legal and social elements need to be developed in consultation with relevant stakeholders and field experts, along with the training accreditation of REC members in the review of data-intensive protocols.
METHODS: We explored REC members\' views and experiences on data sharing by conducting 20 semi-structured interviews online between June 2022 and February 2023. Using purposive sampling and snowballing, we recruited representatives across sub-Saharan Africa (SSA). We transcribed verbatim and thematically analysed the data with Atlas.ti V22.
RESULTS: Three dominant themes were identified: (i) experiences in reviewing data sharing protocols, (ii) perceptions of data transfer tools and (iii) ethical, legal and social challenges of data sharing. Several sub-themes emerged as: (i.a) frequency of and approaches used in reviewing data sharing protocols, (i.b) practical/technical challenges, (i.c) training, (ii.a) ideal structure of data transfer tools, (ii.b) key elements of data transfer tools, (ii.c) implementation level, (ii.d) key stakeholders in developing and reviewing a data transfer agreement (DTA), (iii.a) confidentiality and anonymity, (iii.b) consent, (iii.c) regulatory frameworks, and (iii.d) stigmatisation and discrimination.
CONCLUSIONS: Our results indicated variability in REC members\' perceptions, suboptimal awareness of the existence of data protection laws and a unanimously expressed need for REC member training. To promote efficient data sharing within and across SSA, guidelines that incorporate ethical, legal and social elements need to be developed in consultation with relevant stakeholders and field experts, along with the training accreditation of REC members in the review of data-intensive protocols.
摘要：
背景：阻碍数据共享成功的几个因素——模糊或零散的监管环境，相互冲突的机构/研究人员利益和不同水平的数据科学相关的专业知识就是其中之一。鉴于数字技术和人工智能（AI）带来的独特挑战，传统的道德监督机制和做法可能无法很好地保证充分的研究监督。数据密集型研究提出了新的,在非洲研究环境中特别相关的语境伦理和法律挑战。然而，没有进行实证研究来探索这些挑战。
方法：我们通过在2022年6月至2023年2月之间进行20次半结构化在线访谈，探索了REC成员对数据共享的看法和经验。使用有目的的采样和滚雪球，我们招募了撒哈拉以南非洲（SSA）的代表。我们逐字抄录，并使用Atlas对数据进行主题分析。tiV22。
结果：确定了三个主要主题：（i）审查数据共享协议的经验，(二)对数据传输工具的看法和(三)道德，数据共享的法律和社会挑战。出现了几个子主题：（i。a)审查数据共享协议的频率和方法，(i.b)实际/技术挑战，(i.c)培训，(ii)a)数据传输工具的理想结构，(ii)b)数据传输工具的关键要素，(ii)c)实施水平,(ii)D)制定和审查数据传输协议(DTA)的关键利益相关者，(iii)a)机密性和匿名性，(iii)b)同意，(iii)C)监管框架，和（iii.d)污名化和歧视。
结论：我们的结果表明REC成员的感知存在差异，对数据保护法的存在的认识不够理想，并且一致表示需要进行REC成员培训。为了促进SSA内部和跨SSA的有效数据共享，纳入道德准则，需要与相关利益攸关方和实地专家协商，制定法律和社会要素，以及REC成员在审查数据密集型协议方面的培训认证。
方法：我们通过在2022年6月至2023年2月之间进行20次半结构化在线访谈，探索了REC成员对数据共享的看法和经验。使用有目的的采样和滚雪球，我们招募了撒哈拉以南非洲（SSA）的代表。我们逐字抄录，并使用Atlas对数据进行主题分析。tiV22。
结果：确定了三个主要主题：（i）审查数据共享协议的经验，(二)对数据传输工具的看法和(三)道德，数据共享的法律和社会挑战。出现了几个子主题：（i。a)审查数据共享协议的频率和方法，(i.b)实际/技术挑战，(i.c)培训，(ii)a)数据传输工具的理想结构，(ii)b)数据传输工具的关键要素，(ii)c)实施水平,(ii)D)制定和审查数据传输协议(DTA)的关键利益相关者，(iii)a)机密性和匿名性，(iii)b)同意，(iii)C)监管框架，和（iii.d)污名化和歧视。
结论：我们的结果表明REC成员的感知存在差异，对数据保护法的存在的认识不够理想，并且一致表示需要进行REC成员培训。为了促进SSA内部和跨SSA的有效数据共享，纳入道德准则，需要与相关利益攸关方和实地专家协商，制定法律和社会要素，以及REC成员在审查数据密集型协议方面的培训认证。
