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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

Genetics in Medicine : Official Journal of the American College of Medical Genetics

|April 7, 2009

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.

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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.