NIH support of mobile, imaging, pervasive sensing, social media and location tracking (MISST) research: laying the foundation to examine research ethics in the digital age
NIH support of mobile, imaging, pervasive sensing, social media and location tracking (MISST) research: laying the foundation to examine research ethics in the digital age
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DOI：
10.1038/s41746-017-0001-5
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发表时间：
2018-01-15
影响因子：
15.2
通讯作者：
Nebeker, Camille
中科院分区：
文献类型：
--
作者：
Dunseath, Sarah;Weibel, Nadir;Nebeker, Camille
研究中使用的移动成像、普及传感、社交媒体和位置跟踪(MISST)工具给负责保护人类参与者的科学家和机构审查委员会(IRBs)提出了新的伦理挑战。然而，几乎没有指导意见来指导伦理设计和IRB对MISST研究的监管审查。MISST工具/方法产生大量和细粒度的个人健康数据，可能不受《健康信息可携带性和可获得性法案》(HIPAA)等政策的约束。NIH研究组合在线报告工具(RETERVER)数据库用于确定NIH在三个时间点：2005年、2010年和2015年支持的与MISST相关的研究的数量、性质和范围。目标是：1-检查NIH对这项研究的支持程度，2-确定这些工具在研究中是如何使用的。从2005年到2015年，资助的MISST研究项目数量增加了384%。结果显示，虽然MISST研究的资金正在增长，但它仅占2015年NIH总预算的1%左右。然而，支持MISST研究的机构、机构和中心的数量增加了大约50%。此外，MISST研究的范围是多样化的，从使用社交媒体跟踪疾病传播到通过移动健康应用提供个性化干预。鉴于MISST研究约占NIH预算的1%，并处于不断上升的轨道上，支持能够为与这项研究相关的伦理、法律和社会问题提供信息的研究是至关重要的。
Mobile Imaging, pervasive Sensing, Social media and location Tracking (MISST) tools used in research are raising new ethical challenges for scientists and the Institutional Review Boards (IRBs) charged with protecting human participants. Yet, little guidance exists to inform the ethical design and the IRB's regulatory review of MISST research. MISST tools/methods produce personal health data that is voluminous and granular and, which may not be subject to policies like the Health Information Portability and Accessibility Act (HIPAA). The NIH Research Portfolio Online Reporting Tools (RePORTER) database was used to identify the number, nature and scope of MISST-related studies supported by the NIH at three time points: 2005, 2010 and 2015. The goal was to: 1-examine the extent to which the NIH is supporting this research and, 2-identify how these tools are being used in research. The number of funded MISST research projects increased 384% from 2005 to 2015. Results revealed that while funding of MISST research is growing, it only represented about 1% of the total NIH budget in 2015. However, the number of institutes, agencies, and centers supporting MISST research increased by roughly 50%. Additionally, the scope of MISST research is diverse ranging from use of social media to track disease transmission to personalized interventions delivered through mobile health applications. Given that MISST research represents about 1% of the NIH budget and is on an increasing upward trajectory, support for research that can inform the ethical, legal and social issues associated with this research is critical.