Pharmacogenetic Research: Perceptions of Informed Consent

Abstract

GlaxoSmithKline (formerly Glaxo Wellcome Genetics Directorate) undertook a descriptive study to elicit volunteers' perceptions of a pharmacogenetic research consent form, an educational brochure, and a video; and to identify modifications in these materials that would enhance their usefulness. Face-to-face interviews were conducted to obtain feedback on the material and assess volunteer understanding of the basic components of the study. Although repeated exposure to key information in different formats resulted in improved comprehension, almost one-third of respondents could not accurately describe the two options for participating in the pharmacogenetic research. Almost all of the respondents reported that they would like to have the brochure, video, or both, in addition to the consent form. These results underscore the importance of providing volunteers with the opportunity for discussion with the study physician. They also support the use of supplementary aids to accommodate different styles of processing information. The respondents' suggestions will be considered when the materials are revised.