利益相关者的知识和建议 关于数据科学健康研究的伦理监督:定性研究协议
Clement Adebamowo1,2,3, Adeola Akintola2, Oluchi C Maduka4
1Department of Epidemiology and Public Health, University of Maryland School of Medicine, Baltimore, MD, United States.
JMIR research protocols
|October 23, 2025
概括
数据科学健康研究 (DSHR) 在尼日利亚面临道德挑战. 本研究收集了利益相关者的意见,以制定更好的道德监督框架,专注于同意,数据所有权和捐助者保护.
科学领域:
- 医疗信息学 医疗信息学
- 生物伦理学生物伦理学
- 公共卫生政策 公共卫生政策
背景情况:
- 数据科学健康研究 (DSHR) 利用大数据和计算方法获得健康见解,但也带来了伦理,法律和社会挑战.
- 在DSHR伦理监管中的差距包括不清楚的数据使用界限,数据捐赠者保护不足,提取性研究风险,算法偏见和监管问题.
- 尼日利亚不断扩大的DSHR景观凸显了这些担忧,这些担忧是低收入和中等收入国家的典型.
研究的目的:
- 了解尼日利亚的DSHR的伦理,法律和社会影响 (ELSI).
- 根据利益相关者的观点,为DSHR开发新的伦理监督框架.
- 从尼日利亚DSHR利益相关者那里获得有关当前挑战和未来需求的见解.
主要方法:
- 进行了65次与各种DSHR利益相关者 (研究人员,伦理委员会成员,决策者) 进行的关键信息采访.
- 使用65项面试指南,涵盖政策意识,ELSI,监督流程和利益相关者角色.
- 分析了60-90分钟的录音采访,使用混合演-诱导方法与代编码.
主要成果:
- 65名参与者 (77%是男性,平均年龄为47.9岁) 包括DSHR研究人员,生物医学研究人员,伦理委员会成员和政策制定者.
- 大多数参与者持有博士学位,并隶属于学术/政府机构; 77%受过一般研究伦理学培训.
- 只有12%的人接受了针对DSHR的伦理培训,但92%的人认识到需要专门的DSHR伦理教育.
结论:
- 为DSHR道德监督提出了利益相关者知情的建议,解决了广泛的同意,ELSI,数据所有权,利益共享和捐助者保护.
- 调查结果将为全球的DSHR和研究伦理学社区提供关于适合环境的监督机制的信息.
- 在资源有限的环境中,促进公平的伙伴关系,共同所有权和分层数据治理对于DSHR至关重要.
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