Clarity and Appeal of a Multimedia Informed Consent Tool for Biobanking

The complexity of biobank research raises concerns about individuals’ understanding of the information conveyed in the consent process for such research.. We report the results of a qualitative, cognitive interview study with an ethnically, linguistically, and educationally diverse sample of 43 respondents to assess the clarity and utility of a multimedia tool developed for a biobank. Using weighted randomization, respondents were assigned to either view the multimedia tool (n = 33) or read a written consent document (n = 10). The study illustrates the utility of cognitive interviews for gaining insights from prospective research participants about the clarity of informed consent tools. Findings suggest that a multimedia tool is useful for communicating key messages but should be combined with a written consent document and personal interaction with the study staff. We recommend that the potential value of multimedia tools should be more rigorously tested in a randomized controlled trial.

Key words/concepts: human subjects research, research ethics, informed consent, multimedia, cognitive interviewing, biobanks

Sarah A. McGraw, Carol A. Wood-Nutter, Mildred Z. Solomon, Karen J. Maschke, Jeannette T. Benson, and Debra E. Irwin, “Clarity and Appeal of a Multimedia Informed Consent Tool for Biobanking,” IRB: Ethics & Human Research 34, no. 1 (2012): 9-19.