Peninsula Medical School, University of Exeter, Exeter, UK.
J Med Ethics. 2011 Dec;37(12):752-8. doi: 10.1136/medethics-2011-100080. Epub 2011 Sep 24.
The internet is widely used for health information and support, often by vulnerable people. Internet-based research raises both familiar and new ethical problems for researchers and ethics committees. While guidelines for internet-based research are available, it is unclear to what extent ethics committees use these. Experience of gaining research ethics approval for a UK study (SharpTalk), involving internet-based discussion groups with young people who self-harm and health professionals is described. During ethical review, unsurprisingly, concerns were raised about the vulnerability of potential participants. These were dominated by the issue of anonymity, which also affected participant safety and consent. These ethical problems are discussed, and our solutions, which included: participant usernames specific to the study, a closed website, private messaging facilities, a direct contact email to researchers, information about forum rules displayed on the website, a 'report' button for participants, links to online support, and a discussion room for forum moderators. This experience with SharpTalk suggests that an approach to ethics, which recognises the relational aspects of research with vulnerable people, is particularly useful for internet-based health research. The solutions presented here can act as guidance for researchers developing proposals and for ethics committees reviewing them.
互联网被广泛用于获取健康信息和支持，通常是由弱势群体使用。基于互联网的研究给研究人员和伦理委员会带来了既熟悉又新颖的伦理问题。虽然有针对基于互联网的研究的指南，但不清楚伦理委员会在多大程度上使用了这些指南。本文描述了一项英国研究（SharpTalk）的经验，该研究涉及有自伤行为的年轻人和卫生专业人员的互联网讨论小组。在伦理审查期间，不出所料，人们对潜在参与者的脆弱性表示担忧。这些担忧主要集中在匿名问题上，这也影响了参与者的安全和同意。本文讨论了这些伦理问题，以及我们的解决方案，包括：特定于研究的参与者用户名、封闭的网站、私人消息传递设施、直接联系研究人员的电子邮件、网站上显示的论坛规则信息、为参与者提供的“报告”按钮、在线支持链接以及论坛管理员的讨论室。SharpTalk 的经验表明，一种承认与弱势群体进行研究的关系方面的伦理方法，对于基于互联网的健康研究特别有用。这里提出的解决方案可以为制定提案的研究人员和审查这些提案的伦理委员会提供指导。
