IRB: Ethics & Human Research

Clarity and Appeal of a Multimedia Informed Consent Tool for Biobanking

by Sarah A. McGraw, Carol A. Wood-Nutter, Mildred Z. Solomon, Karen J. Maschke, Jeannette T. Benson, and Debra E. IrwinPublished Volume: 34 | Issue: 1

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.