Understanding biobanking: An assessment of the public engagement speaking book intervention Biobanking and Me

Abstract

Background. Meaningful engagement with donors of biological samples intended for human-sample biobanking increases knowledge, and allows donors to make informed decisions. Informed donors provide a platform for public awareness, allowing communities to understand the impact of research, and may even encourage more people to donate biological samples. Objectives. The Biobanking and Me speaking book was written to explain relevant concepts, including biobanks, genetic research and participant rights, to persons from any educational level or background. Two bilingual versions of the speaking book (English-Afrikaans and English-isiXhosa) were produced, and the impact of the speaking book was assessed. Methods. Study participants were recruited from non-academic staffing sectors at the University of the Western Cape, South Africa. An experimental research design was followed to assess the efficacy of the speaking book in communicating the topics covered. Paired t -tests were conducted to compare pre- and post-test scores. Descriptive and frequency statistics were used to determine participants’ opinions about the speaking book. Results. Results from the paired t -tests indicated that while a significant increase in knowledge score did not occur for all questions (no significant increase for 8/15), the overall knowledge gain was significant. Analysis of the opinion questionnaire revealed that the majority of participants had a positive reaction to the artwork, bilingual audio and text. Conclusion. The simplicity of the narrative, the illustrations, and the bilingual text and soundtrack make the Biobanking and Me speaking book an effective tool to increase knowledge of biobanking and genetics in an easy-to-use and enjoyable way.