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Veterans' attitudes regarding a database for genomic research
David Kaufman1, Juli Murphy, Lori Erby
1Genetics and Public Policy Center, Johns Hopkins University, Washington, DC, USA. dkaufma2@jhu.edu
Summary
Most Veterans Affairs patients support creating a genomic database and are willing to participate. Altruism and personal health interest strongly influence veteran participation in genetic research.
Area of Science:
- Genomic research
- Population health studies
- Bioinformatics
Background:
- Large cohort studies investigating gene-environment-lifestyle interactions necessitate representative population samples.
- The Department of Veterans Affairs (VA) healthcare system, with its extensive patient base and electronic health records, is well-suited for such research.
- Establishing a large-scale genetic and medical records database within the VA is under consideration for research purposes.
Purpose of the Study:
- To assess the willingness of Veterans Affairs patients to participate in a proposed genomic research database.
- To identify patient concerns regarding participation in a genomic study.
- To understand patient preferences for study design components.
Main Methods:
- An online survey was administered to 931 Veterans Affairs patients in April-May 2008.
- Respondents were informed about a proposed genomic study and surveyed on their support, willingness to participate, and opinions on study aspects.
- Descriptive analysis explored demographic differences in attitudes and the association between general beliefs and study support/participation.
Main Results:
- 83% of respondents supported the creation of the genomic database.
- 71% of respondents indicated they would definitely or probably participate in the study.
- Support and willingness to participate were observed across a broad range of demographic groups.
Conclusions:
- The majority of Veterans Affairs health patients across diverse demographics support establishing a genomic database and are willing to participate.
- A strong desire to learn about personal health was a key motivator for participation.
- Altruistic motivations were significantly correlated with veterans' willingness to participate in the genomic study.
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