Evaluation of the effectiveness of posters to provide information to patients about a DNA database and their opportunity to opt out

Abstract

Objective: Vanderbilt University Medical Center is implementing a DNA Databank to facilitate genomic research. This study describes the use of informational posters to communicate to patients about the Databank and their option to not participate.

Methods: Informational posters were displayed in two phlebotomy areas prior to the implementation of the DNA Databank project. Patients leaving the phlebotomy areas were interviewed by non-medical personnel about the posters and the Databank using a structured interview guide.

Results: Completed interviews with patients (n = 192) show that only 32% recalled seeing the posters (memory of the image only, or of the image and the content of the text). The majority of participants (93%) either recalled the poster or reported that they were comfortable with the DNA Databank concept after they had been read a brief statement about the program. A significant relationship (p = 0.001) appeared between respondents' awareness of research practices concerning anonymous discarded tissues and their level of comfort with the DNA Databank.

Conclusions: Individuals who report feeling uncomfortable with the Databank are an important population to inform about the Databank and opting out. Since there were no statistically significant demographic differences between those who recalled the poster and those who did not, there is no way to prospectively identify which patients will not be reached by the posters or who may feel uncomfortable with the program. Additional mechanisms to promote widespread notification are needed.