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Background <p>In resource-limited settings like Uganda, ethical sharing of health research data is crucial for advancing scientific knowledge. Despite the growing trend of data-sharing in the digital age, its adoption in low-resource contexts is often hampered by complex ethical considerations. This study explored researchers’ perspectives and ethical concerns regarding data-sharing at a public university.</p> Methods <p>A qualitative phenomenographic approach was employed involving 26 participants at Makerere University College of Health Sciences, including professors, lecturers, research fellows, and PhD students. Data was collected through in-depth interviews conducted via Zoom or in person, using an interview guide. Data were analyzed thematically using ATLAS.ti (V9), using both deductive and inductive approaches.</p> Results <p>The study revealed a complex landscape of data-sharing practices among researchers. Participants exhibited varying understandings of data sharing, with some demonstrating limited awareness. Incentives such as financial rewards and co-authorship were widely viewed as crucial for encouraging data sharing. While acknowledging data sources in publications was appreciated, some researchers emphasized the need for co-authorship in cases of significant contributions. Researchers’ autonomy and control over data-sharing practices were influenced by factors such as research concept origination, funding sources, financial status, and analytical skills. Institutional policies, cultural norms, and customs that promote a ‘siloed’ research environment also significantly influenced of data-sharing behavior.</p> Conclusion <p>This study revealed a complex landscape of data-sharing practices among researchers. The varying interpretations of data sharing highlight the need for enhanced education and awareness regarding its importance. The identified incentives, such as financial rewards and co-authorship, which encourage data sharing, suggest a need to establish a fair data-sharing reward system. Additionally, policies that facilitate researchers’ autonomy and data control, while fostering trust, are crucial to address the siloed research culture.</p>

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Unmasking the ethical dimensions of data-sharing in health research: perspectives from researchers at a public university in Uganda

  • 期刊论文

  • 出版模式：

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  • 发表日期：

    2025年12月18日

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  • Paul Kutyabami,
  • Herbert Muyinda,
  • Moses Mukuru,
  • Erisa Mwaka,
  • Kamba Pakoyo,
  • Joan Kalyango,
  • Nelson K. Sewankambo

摘要

Background

In resource-limited settings like Uganda, ethical sharing of health research data is crucial for advancing scientific knowledge. Despite the growing trend of data-sharing in the digital age, its adoption in low-resource contexts is often hampered by complex ethical considerations. This study explored researchers’ perspectives and ethical concerns regarding data-sharing at a public university.

Methods

A qualitative phenomenographic approach was employed involving 26 participants at Makerere University College of Health Sciences, including professors, lecturers, research fellows, and PhD students. Data was collected through in-depth interviews conducted via Zoom or in person, using an interview guide. Data were analyzed thematically using ATLAS.ti (V9), using both deductive and inductive approaches.

Results

The study revealed a complex landscape of data-sharing practices among researchers. Participants exhibited varying understandings of data sharing, with some demonstrating limited awareness. Incentives such as financial rewards and co-authorship were widely viewed as crucial for encouraging data sharing. While acknowledging data sources in publications was appreciated, some researchers emphasized the need for co-authorship in cases of significant contributions. Researchers’ autonomy and control over data-sharing practices were influenced by factors such as research concept origination, funding sources, financial status, and analytical skills. Institutional policies, cultural norms, and customs that promote a ‘siloed’ research environment also significantly influenced of data-sharing behavior.

Conclusion

This study revealed a complex landscape of data-sharing practices among researchers. The varying interpretations of data sharing highlight the need for enhanced education and awareness regarding its importance. The identified incentives, such as financial rewards and co-authorship, which encourage data sharing, suggest a need to establish a fair data-sharing reward system. Additionally, policies that facilitate researchers’ autonomy and data control, while fostering trust, are crucial to address the siloed research culture.