What Do Prospective Research Participants Want to Know? What Do They Assume They Know Already?
Journal of Empirical Research on Human Research Ethics 2009 June; 4(2): 59-63
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.
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van Asperen, C. J.; van Dijk, S.; Zoeteweij, M. W. (Moniek W.); Timmermans, D. R. M.; de Bock, G. H.; Meijers-Heijboer, E. J.; Niermeijer, M. F.; Breuning, M. H.; Kievit, J.; Otten, W. (2002-06)
Taking the Least of You: Most of Us Have Tissue or Blood Samples on File Somewhere, Whether We Know It or Not. What We Don't Typically Know Is What Research They Are Being Used for and How Much Money Is Being Made From Them. and Science May Want to Keep Things That Way Skloot, Rebecca (2006-04-16)
Chen, Donna T.; Rosenstein, Donald L.; Muthappan, Palaniappan; Hilsenbeck, Susan G.; Miller, Franklin G.; Emanuel, Ezekiel J.; Wendler, David (2005-03-28)BACKGROUND: There is widespread disagreement about the type of consent needed for research with stored biological samples. Many believe consent for each future use is required to respect individuals. Others worry this ...