生物医学研究中代表性不足社区对移动健康的接受度：科学家面临的障碍与伦理考量
Acceptance of Mobile Health in Communities Underrepresented in Biomedical Research: Barriers and Ethical Considerations for Scientists.
作者信息
Nebeker Camille, Murray Kate, Holub Christina, Haughton Jessica, Arredondo Elva M
机构信息
Center for Wireless and Population Health Systems, Qualcomm Institute, University of California, San Diego, La Jolla, CA, United States.
Scripps Translational Science Institute, Scripps Health, La Jolla, CA, United States.
出版信息
JMIR Mhealth Uhealth. 2017 Jun 28;5(6):e87. doi: 10.2196/mhealth.6494.
BACKGROUND
The rapid expansion of direct-to-consumer wearable fitness products (eg, Flex 2, Fitbit) and research-grade sensors (eg, SenseCam, Microsoft Research; activPAL, PAL Technologies) coincides with new opportunities for biomedical and behavioral researchers. Underserved communities report among the highest rates of chronic disease and could benefit from mobile technologies designed to facilitate awareness of health behaviors. However, new and nuanced ethical issues are introduced with new technologies, which are challenging both institutional review boards (IRBs) and researchers alike. Given the potential benefits of such technologies, ethical and regulatory concerns must be carefully considered.
OBJECTIVE
Our aim was to understand potential barriers to using wearable sensors among members of Latino, Somali and Native Hawaiian Pacific Islander (NHPI) communities. These ethnic groups report high rates of disparate health conditions and could benefit from wearable technologies that translate the connection between physical activity and desired health outcomes. Moreover, these groups are traditionally under-represented in biomedical research.
METHODS
We independently conducted formative research with individuals from southern California, who identified as Latino, Somali, or Native Hawaiian Pacific Islander (NHPI). Data collection methods included survey (NHPI), interview (Latino), and focus group (Somali) with analysis focusing on cross-cutting themes.
RESULTS
The results pointed to gaps in informed consent, challenges to data management (ie, participant privacy, data confidentiality, and data sharing conventions), social implications (ie, unwanted attention), and legal risks (ie, potential deportation).
CONCLUSIONS
Results shed light on concerns that may escalate the digital divide. Recommendations include suggestions for researchers and IRBs to collaborate with a goal of developing meaningful and ethical practices that are responsive to diverse research participants who can benefit from technology-enabled research methods.
TRIAL REGISTRATION
ClinicalTrials.gov NCT02505165; https://clinicaltrials.gov/ct2/show/NCT02505165 (Archived by WebCite at http://www.Webcitation.org/6r9ZSUgoT).
背景
面向消费者的可穿戴健身产品（如Flex 2、Fitbit）和研究级传感器（如SenseCam，微软研究院；activPAL，PAL技术公司）的迅速扩张，为生物医学和行为研究人员带来了新机遇。服务不足的社区慢性病发病率最高，可能会从旨在促进健康行为意识的移动技术中受益。然而，新技术带来了新的细微伦理问题，这对机构审查委员会（IRB）和研究人员都构成了挑战。鉴于此类技术的潜在益处，必须仔细考虑伦理和监管问题。
目的
我们的目标是了解拉丁裔、索马里裔和夏威夷原住民太平洋岛民（NHPI）社区成员在使用可穿戴传感器方面的潜在障碍。这些族裔的健康状况差异很大，可能会从可穿戴技术中受益，这些技术能转化身体活动与预期健康结果之间的联系。此外，这些群体在生物医学研究中传统上代表性不足。
方法
我们独立对来自南加州、自认为是拉丁裔、索马里裔或夏威夷原住民太平洋岛民（NHPI）的个体进行了形成性研究。数据收集方法包括调查（NHPI）、访谈（拉丁裔）和焦点小组（索马里裔），分析重点是交叉主题。
结果
结果指出了知情同意方面的差距、数据管理方面的挑战（即参与者隐私、数据保密和数据共享惯例）、社会影响（即不必要的关注）和法律风险（即潜在的驱逐出境）。
结论
研究结果揭示了可能加剧数字鸿沟的担忧。建议包括研究人员和IRB合作的建议，目标是制定有意义且符合伦理的做法，以应对能从技术支持的研究方法中受益的不同研究参与者。
试验注册
ClinicalTrials.gov NCT02505165；https://clinicaltrials.gov/ct2/show/NCT02505165（由WebCite存档于http://www.Webcitation.org/6r9ZSUgoT）。
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