Considerations and Recommendations Concerning Internet Research and Human Subjects Research Regulations, with Revisions
Final document, approved at SACHRP meeting March 12-13, 2013
The purpose of this document is to provide a starting point for the development of FAQs and/or Points to Consider regarding the conduct and review of Internet research. Current human subjects regulations, originally written over thirty years ago, do not address many issues raised by the unique characteristics of Internet research. Some IRBs, concerned about their ability to make appropriate and responsible decisions regarding Internet research, have developed working guidelines for investigators.1 Many of these guidelines focus on technical questions about data security, but there are other issues to address: basic categorizations of types of Internet research; types of data; data identifiability and subject privacy; appropriate consent and authentication of subjects procedures; jurisdictional authority; data collection, data storage, research administration, and data destruction; data sharing practices and implications; and discussion of what is common, reasonable, and acceptable in a given Internet environment and how these standards relate to current regulations and guidance in the areas of informed consent, recruitment, and risk of harm.
Ethical conduct of Internet research also brings questions of scientific design into high relief: authenticity of subject identity, assurance of comprehension of consent, and verification of data integrity can present significant challenges.