Ethics and Privacy Implications of Using the Internet and Social Media to Recruit Participants for Health Research: A Privacy-by-Design Framework for Online Recruitment.
Ethics and Privacy Implications of Using the Internet and Social Media to Recruit Participants for Health Research: A Privacy-by-Design Framework for Online Recruitment.
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DOI：
10.2196/jmir.7029
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发表时间：
2017-04-06
影响因子：
7.4
通讯作者：
Ferris LE
中科院分区：
文献类型：
--
作者：
Bender JL;Cyr AB;Arbuckle L;Ferris LE
互联网和社交媒体为以合理成本提高招聘工作的覆盖面、效率和效力提供了有前途的途径，但也带来了独特的道德困境。我们描述了我们如何使用社交媒体招募癌症患者和家庭护理人员进行研究，我们遇到的伦理问题以及我们为解决这些问题而制定的策略。根据全球公认的隐私保护标准隐私设计（PbD）的原则，我们旨在为在线健康研究招聘开发一个PbD框架。我们提出了一个焦点小组研究癌症患者及其家属的饮食行为，以及基于网络的饮食自我管理工具的作用。利用我们医院网站上的一个已建立的博客，我们建议发布一个招聘帖子，并在我们的Twitter和Facebook页面上分享链接。研究伦理委员会（REB）对与我们的招聘策略相关的隐私风险提出了担忧;通过点击招聘帖子，个人可能会无意中将个人健康信息泄露给从事跟踪在线行为的第三方公司。REB要求我们修改社交媒体招聘策略，并考虑以下问题：（1）如何告知用户隐私泄露的可能性及其影响？以及（2）如何保护用户免受隐私泄露或无意中共享有关他们自己的潜在身份信息？道德准则建议采用相称的道德评估方法，主张采取与风险的程度和可能性相称的风险缓解战略。我们修订了社交媒体招聘策略，以告知用户隐私风险并保护他们的隐私，同时满足我们的招聘目标。我们提供了与我们的社交媒体招聘策略相关的感知隐私风险的批判性反映，以及我们通过评估其与PbD的一致性和讨论以下内容所采用的风险缓解策略的适当性：（1）潜在风险是什么？(2)癌症被视为“敏感”个人信息吗？(3)在日常生活中，网上披露癌症诊断的概率是多少？以及（4）公众对在线隐私的期望是什么，他们对在线跟踪、分析和定位的看法是什么？最后，我们与PbD框架在线健康研究招聘。研究人员、REB、伦理学家、学生和潜在的研究参与者往往没有意识到社交媒体研究招募的隐私风险，也没有官方指导。我们的在线健康研究招聘PbD框架是这些广泛受众的资源。
The Internet and social media offer promising ways to improve the reach, efficiency, and effectiveness of recruitment efforts at a reasonable cost, but raise unique ethical dilemmas. We describe how we used social media to recruit cancer patients and family caregivers for a research study, the ethical issues we encountered, and the strategies we developed to address them. Drawing on the principles of Privacy by Design (PbD), a globally recognized standard for privacy protection, we aimed to develop a PbD framework for online health research recruitment. We proposed a focus group study on the dietary behaviors of cancer patients and their families, and the role of Web-based dietary self-management tools. Using an established blog on our hospital website, we proposed publishing a recruitment post and sharing the link on our Twitter and Facebook pages. The Research Ethics Board (REB) raised concern about the privacy risks associated with our recruitment strategy; by clicking on a recruitment post, an individual could inadvertently disclose personal health information to third-party companies engaged in tracking online behavior. The REB asked us to revise our social media recruitment strategy with the following questions in mind: (1) How will you inform users about the potential for privacy breaches and their implications? and (2) How will you protect users from privacy breaches or inadvertently sharing potentially identifying information about themselves? Ethical guidelines recommend a proportionate approach to ethics assessment, which advocates for risk mitigation strategies that are proportional to the magnitude and probability of risks. We revised our social media recruitment strategy to inform users about privacy risks and to protect their privacy, while at the same time meeting our recruitment objectives. We provide a critical reflection of the perceived privacy risks associated with our social media recruitment strategy and the appropriateness of the risk mitigation strategies that we employed by assessing their alignment with PbD and by discussing the following: (1) What are the potential risks and who is at risk? (2) Is cancer considered “sensitive” personal information? (3) What is the probability of online disclosure of a cancer diagnosis in everyday life? and (4) What are the public’s expectations for privacy online and their views about online tracking, profiling, and targeting? We conclude with a PbD framework for online health research recruitment. Researchers, REBs, ethicists, students, and potential study participants are often unaware of the privacy risks of social media research recruitment and there is no official guidance. Our PbD framework for online health research recruitment is a resource for these wide audiences.