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Print this pageWashington, DC - April 09, 2009 - A majority of veterans who receive health care through the Department of Veterans Affairs (VA) would likely support and participate in a proposed large-cohort genetic study at the VA, the Center has found. Participants in a recent Center survey also gave feedback on aspects of the proposed study’s design. The Center’s David Kaufman, Juli Murphy, Kathy Hudson, and Joan Scott, along with Lori Erby of the Johns Hopkins Bloomberg School of Public Health, describe the results in “Veterans’ attitudes regarding a database for genomic research,” now available online in Genetics in Medicine.
The VA has a long history of research to benefit veterans’ health, including cohort research examining patients’ records for associations between, for example, smoking and disease. Its electronic health records and diverse patient population make the agency particularly well-positioned to carry out such cohort research. In 2006 the VA created a Genomic Medicine Program to examine the use of genetic information to improve the health of veterans. The agency proposes establishing a database of genetic information obtained from analyzing DNA from participants’ blood samples linked to information in the participants’ electronic health records. Such a database, with appropriate privacy protections in place, would be a powerful tool for researchers seeking links between genes, environmental factors, and health outcomes. Before deciding whether and how to undertake such a project, the VA asked the Center to find out whether veterans who get health care through the VA would support a genomic database, and under what circumstances.
The authors first conducted a series of nine focus groups in VA medical centers in Atlanta, the Bronx, Denver, and San Antonio. The team used focus group members’ responses to craft an 80-question online survey, which was administered by the company Knowledge Networks to 931 qualifying veterans. To qualify, respondents had to receive at least some of their health care through the VA.
Eighty-three percent of respondents thought the database should “definitely” or “probably” be created, and 71 percent indicated they would definitely or probably serve as a research subject if asked. Eighty-four percent believed the proposed database would “lead to improved treatments, cures, or lives saved for veterans,” and most respondents agreed with the statement that they were curious about the influence of genes on health.
Having their privacy protected was the greatest concern respondents expressed: Ninety-eight percent said it would be important for the VA to develop safeguards to protect their information. Although researchers who used the database would not be given identifying information, a key would be needed if participants’ medical information were to be kept up to date in the database. Despite concerns about privacy, three in four thought a key should be kept. Maintaining a key could also allow participants to learn about results of research using their information, and nine in 10 indicated they would want to know their individual research results.
The results of the survey are similar to those of another recent Center study, which examined public attitudes toward large-scale, long-term gene-environment research projects. The earlier survey also found broad support and willingness to participate in such research projects and strong desire for individual research results. – Shawna Williams
Kaufman, D., J. Murphy, L. Erby, K. Hudson, and J. Scott. 2009. Veterans' attitudes regarding a database for genomic research. Genetics in Medicine 11(publish ahead of print).
Article - Center conducts public consultation project for VA
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