在FTLD研究中的数据管理:研究人员和研究参与者的观点
Jalayne J Arias1,2, Ana M Tyler1, Laura M Beskow3
1Memory and Aging Center, Department of Neurology, Weill Institute for Neurosciences, University of California, San Francisco, San Francisco, California, USA.
概括
在前叶退行症 (FTLD) 研究中调查数据管理揭示了道德挑战. 结果突出了参与者和调查人员对数据共享,入学和安全的看法,为未来的FTLD研究准则提供了信息.
科学领域:
- 神经科学是一个神经科学.
- 遗传学 遗传学是一种遗传学.
- 生物伦理学生物伦理学
背景情况:
- 联邦政策越来越多地要求回报个人研究结果和数据共享.
- 在前叶退行症 (FTLD) 研究中的数据管理提出了独特的伦理考虑.
研究的目的:
- 探索研究人员和参与者对FTLD研究中的数据管理的观点.
- 在FTLD研究中确定与数据管理和共享相关的伦理挑战和需求.
主要方法:
- 与参与遗传数据收集/分析的FTLD研究人员进行了半结构化采访.
- 接受采访的参与者在一个单一地点参加了一项纵向FTLD研究.
主要成果:
- 确定了三个关键主题:数据共享视角,入学/参与体验以及数据管理/安全,以保护参与者.
- 确定了FTLD研究数据管理中的初步缺口和需求.
结论:
- 这项研究提供了对FTLD研究数据管理的伦理挑战的初步见解.
- 结果旨在为未来FTLD数据管理和共享的指导方针和政策的制定提供信息.
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