What Do Prospective Research Participants Want to Know? What Do They Assume They Know Already?

Abstract

Using a framework based on conversational pragmatics, data were collected on spontaneous information requests by people who were invited to participate in a simple research study. Subjects requested information on some standard elements of consent (e.g., scientific purpose, time required, investigator), but not others (e.g., voluntariness, freedom to quit, data maintenance, risks). Using post hoc fixed response queries, we investigated factors responsible for absence of queries on elements of consent. We found that participants sometimes did not ask because they assumed they already knew the answer; other times they did not care about the answer. This small pilot study suggests that inclusion of elements considered inappropriate by respondents may be redundant and, in at least some circumstances, potentially confusing.