Study asking 4,000 Veterans how much they want to know
VA funds an array of studies on genes and their role in health and diseases. The centerpiece is the Million Veteran Program (MVP). It’s one of the world’s largest databases of health and genetic information. Scientists are using the data to learn about PTSD, diabetes, Gulf War illness and other conditions affecting VA patients. The data is coded, to protect Veterans’ privacy.
MVP does not return individual genetic results to enrollees. But as VA genetic research continues to expand, researchers want to learn about Veterans’ preferences in this area.
Dr. Sara Knight of the VA Salt Lake City Health Care System is leading a study that aims to find out if Vets want their results returned, why they’d want them returned, and what details they’d want to see and under what circumstances.
May need knowledge of genetics to understand results
“There’s an urgent need to know this information, but we just don’t understand what Veterans want,” Knight said. “That’s what this study will find out about and document. With that evidence, we can go to VA policymakers and say, `We have great interest among Veterans, but they need some things to occur when they get the results back. They need to be able to talk to someone who has knowledge of genetics, someone who can help them understand the results.’ This study starts to define what the Veterans want and under what conditions they want it.”
For MVP Director Dr. Sumitra Muralidhar, the study will provide crucial answers:
“In our ad-hoc discussions with Veterans on this subject, some are very interested in getting their genetic results, especially if it has a bearing on their health,” Muralidhar said. “Other Veterans don’t want to know their genetic results. Still, others worry that their VA benefits may be affected if they have positive results for certain illnesses.”
Knight points out that genetic results can be difficult to understand, and their implications are often uncertain. Experts disagree on the value of returning results that are expected to have little clinical impact. There’s more agreement on the return of results that could guide treatment.
Veterans may or may not want to know
With some genetic results, Knight said, “the results may tell you about your risks for a condition for which no treatment exists. They may also say you have only a very small chance of having a specific diagnosis. But you may not want to be concerned about that small risk.
“The results may also note that there’s a change in a gene. But with our current science, we don’t know if the change is linked to any specific condition or disease. You also may get results from genome sequencing that indicate a different condition or disease than what you and doctors were looking for in the first place.
“That’s where Veterans might say, `I don’t want to know about that gene that changed. I don’t want to worry about it.’ But others might say, `I want to know about it now. When you have a treatment for it or when you know what it means, I want you to re-contact me.’
“You can see the dilemma that creates for research. We just don’t know how people feel about these things at this point.”
Those are just some of the questions Knight’s study aims to answer. A diverse sample of nearly 4,000 Veterans will take part.
To learn more about this study, visit VA Research Currents, and listen to a podcast featuring Dr. Sara Knight.
Photo by Tod Peterson
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