Evaluation of the effectiveness of posters to provide information to patients about a DNA database and their opportunity to opt out
- 220 Downloads
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.
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.
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.
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.
KeywordsGenetics Notification Patient Attitudes Informational signs Perceptions
We would like to thank Ashley Deets, Brandon Martin, and Alice Owens-Gatlin for their time and effort in preparing for and executing the interviews. Our appreciation also extends to Sheryl Zhong, VUMC Department of Biostatistics, for her assistance with the sample/population analyses presented in this article. This article contains original data; Jill Pulley and Margaret Brace have had full access to all the data in the study and take responsibility for the integrity of the data and the accuracy of the data analysis. Financial disclosure: No external funding was provided for this study. Authors do not have financial conflicts of interest.
- The Gallup Organization (2000) Public attitudes toward medical privacy. Retrieved from http://www.forhealthfreedom.org/Gallupsurvey/IHF-Gallup.html
- Office for Civil Rights, Department of Health and Human Services (2003) Standards for privacy of individually identifiable health information: Regulation text. Retrieved from http://www.hhs.gov/ocr/combinedregtext.pdf
- Office for Human Research Protections, Department of Health and Human Services (2004) Guidance on research involving coded private information or biological specimens. Retrieved from http://www.hhs.gov/ohrp/humansubjects/guidance/cdebiol.pdf
- Ward K, Hawthorne K (1994) Do patients read health promotion posters in the waiting room? A study in one general practice. Brit J Gen Practice 44:583–585Google Scholar