Pharmacogenetic Research: Perceptions of Informed Consent

• Published in: Drug information journal Vol. 36; no. 1; pp. 83 - 93
• Main Authors: McPherson, Elizabeth C., Ray, Susan C., Rieser, Patricia A., Manasco, Penelope K.
• Format: Journal Article
• Language: English
• Published: Los Angeles, CA SAGE Publications 2002; Pergamon Press; Springer Nature B.V
• Subjects: Biological and medical sciences; Brochures; Consent; Genetics; Information processing; Informed consent; Medical sciences; Pharmacology; Descriptive study; Pharmacogenetic research; Informed consent; Perceptions of informed consent; Written and audiovisual materials for informed consent
• ISSN: 2168-4790; 0092-8615; 2168-4804; 2164-9200
• DOI: 10.1177/009286150203600113

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.