Social network research and human subjects protection: Towards more effective infectious disease control

Abstract

The issue of human subject protection in relation to social network research on the spread and control of human pathogens is considered. As this area derives most of its concepts and methods from social network analysis more generally, the present discussion has wider relevance. One problem is that some Institutional Review Boards (IRBs) have assumed that if a participant (who gave informed consent) is to be asked to name network associates these too - automatically - would be human subjects from whom informed consent also must be obtained. Invariably, if this occurs proposed research - whatever its funding and potential contributions might be - is blocked. A conservative approach is taken here. The Common Rule is assumed to provide relevant guidance, the responsibility of IRBs is to make decisions based on the Common Rule, and in consequence the burden is on those proposing social network research to design - and defend - their planned work with this in mind. At the same time, it is argued that it is important not to stifle beneficial research by adding to one inherently conservative review process (of grant proposals) another (of IRBs) so that work is prevented simply because it is research at the frontiers rather than 'safe' research. Show more