Attitudes and perceptions of patients towards methods of establishing a DNA biobank
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Background This study aimed to assess patient attitudes as part of the planning process for a large-scale effort to collect genetic samples for research from excess clinical blood specimens (‘DNA Databank’ project). Method A pre-tested, 38-item questionnaire was mailed to a random sample of 5,000 inpatients, outpatients, and emergency department patients. Results Approximately 20% of patients responded (n = 1003). Most were comfortable with anonymized genetic information being used for research (89.3%) and supported the potential benefits (98.7%). A binary logistic regression on the level of comfort with the DNA program shows that the variability in respondents’ feelings about the program can best be explained by beliefs, age, and health status. Respondents were attitudinally segmented into 5 distinct categories. Conclusions These data indicate general acceptance among respondents, but a subset of the population would be opposed to the program. This reinforces the need to broadly and continuously communicate with patients about the program and the ability to exclude a given sample. The effects of prior beliefs would benefit from further exploration.
KeywordsBiobank Community DNA Patient attitudes
Vanderbilt University Medical Center
We would like to thank Dan Byrne and Sheryl Zhong, VUMC Department of Biostatistics, for their assistance with the statistical 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. No external funding was provided for this study. Authors do not have financial conflicts of interest.
- The Gallup Organization (2004) Public attitudes toward medical privacy. Sept 2000. Available online at http://www.forhealthfreedom.org/Gallupsurvey/IHF-Gallup.html
- Kettis-Lindblad A, Ring L, Viberth E, Hansson M (2005) Genetic research and donation of tissue samples to biobanks: what do potential sample donors in the Swedish general public think? Eur J Public Health [Epub ahead of print]:1–8Google Scholar
- Office for Human Research Protections, Department of Health and Human Services (2004) Guidance on research involving coded private information or biological specimens. Aug 10, 2004. Available online at http://www.hhs.gov/ohrp/humansubjects/guidance/cdebiol.pdf
- Office on Women’s Health, US Department of Health and Human Services (2004) National action plan for breast cancer. Accessed 9/26/04, at http://www.4woman.gov/napbc/