The use of online tools for research is increasingly prevalent. Email, surveys, social media sites, and mobile devices provide a quick way to gain access to a large number of potential subjects and information without expending too many resources. While this is good news for investigators, this raises many unresolved questions concerning recruitment, privacy, confidentiality, and informed consent. The current HSR regulations do not address many of the unique issues associated with transmission of data over the Internet. This guidance is intended to shed light on a variety of issues surrounding research involving web-based tools and mobile devices and to help investigators design studies that are in line with the currently regulatory and ethical landscape.
Research using the Internet includes both use of the web as a tool for research and use of the web as a locale or venue of research. For example, research employing survey instruments, search engines, databases, or databanks would constitute using the web as a tool for research. Such research may not involve direct interaction with human subjects, but identifiers or personally identifiable information may be generated, collected, and/or analyzed. In contrast, using the web as a medium or locale of research entails qualitative or quantitative studies of various web-based spaces, such as chat rooms, virtual environments, or social media sites. Some of the most common uses of the web for research include:
- Research studying information that is already available online without direct interaction with human subjects (harvesting, mining, profiling, scraping—observation or recording of otherwise-existing data sets, chat room interactions, blogs, social media postings, etc.).
- Research that uses the web as a vehicle for recruiting or interacting, directly or indirectly with subjects (self-tests, survey tools, crowdsourcing sites, etc.).
- Research about the web itself (use patterns or effects of social media, search engines, email; evolution of privacy issues; information contagion; etc.).
- Research about web users—what they do online, and how that affects them and their behaviors.
- Research that utilizes the web as an interventional tool (e.g., interventions that influence subjects’ behavior).
- Others (emerging and cross-platform types of research and methods, including mobile research).
- Recruitment in or through web locales or tools (e.g., websites, screening applications, social media, push technologies).