Exploring Veterans’ preferences for receiving genetic test results

Study asking 4,000 Veterans how much they want to know


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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

Author

Michael Richman

Mike Richman is a writer and editor in VA’s Office of Research and Development. He joined VA in 2016. He previously worked at the Voice of America, one of the U.S.-funded broadcast agencies.

Comments

  1. George Elliott Kernaghan    

    Yes ! I want my results !!! I am George Kernaghan, and I was a part of the very first SKY GENOME TEST, conducted by Dr. Henry Heng and Dr. Asaf Durakovic at the Wayne State University, Uranium Research Center in Michigan, during 2007. I am patient number “B-1” of the SKY GENOME TEST, and I have never been able to receive a copy of the tests results from 2007. Please contact me ASAP. Thank you.

  2. Louis C Wacker    

    I don’t give a dam about your genetic testing and expect no more letters or appointments from you.

  3. Lazaro Gutierrez    

    I’m in agreement with David, my thoughts are that although beneficial, the Test Results may then be used to dismiss any VA Medical Benefits. Most of everyone knows that they VA is going to fight tooth and nail to get Vets disability. I have been on the Camp LeJuene Contaminated Water for Years and getting ill, yet, nada. Thanking All my Brothers & Sisters for Your Service. Stay Strong GO HARD Because going Home is never an Option!!!!!!!!!!!!!!!!! Semper Fidelis.

  4. Another vet    

    I want to know!!! It is my option to review it or not. Make it available. No one asked me if I wanted to see my x-ray, or my MRI, or the results of my blood tests. And none of it should affect the reduction in benefits at all!!!!

  5. Robert G. Bauman    

    I belong to the “Million Veteran Program”, I was Very Disappointed when told the whole world would know about me…Except ME! I have been trying to follow the Family’s Ancestry, but reached a stopping point when I discovered my Maternal Grandfather had to change his name when he arrived here because he was a 16 years old, unaccompanied “child” and could not enter America. He hooked up with another Norwegian Family and took their last name and kept it every since.
    I have no information about his childhood in Norway.
    I can not afford to pay for the tests, and not sure how accurate they would be.

  6. Master    

    Absolutely on point

  7. Michael Wittig    

    I was given the results of my genetic testing specific to a heart condition called hypertrophic cardio myopathy. Through genetic testing we discovered it traced back to my mother. It helped six of my family members to discover that they have genetic heart defects & four of us have defibrillators put in her chest because of it. Genetic testing is important. I know that people have concerns of losing their benefits… which needs to be addressed positively for Veterans.

    1. Robert G. Bauman    

      I have Hypertrophic Cardiomyopathy, also. If the Military had given me a proper check up, I would never have been able to serve, but I was told I could not be told about any results. I have a defibrillator and had to hunt down my 2 sons to ask them to be tested on my own. The VA only cares about RESULTS, not Veterans!

  8. Launa Wentworth    

    I would like to know the results. Just because test show you MAY be at risk for certain diseases does not mean you will get it. Know the information could help me focus on prevention of those illnesses.

    1. Claudia Switzer    

      Yes I have called about my results, but havent received it yet. I want to know why I have restless leg syndrome.

  9. Ida R Chisholm    

    I would like to know of anything that you fine out about my health because it may be to late for me but it could health out my children I think you should know about the good and bad .

  10. Charles Hutchins MacMahon III    

    I welcome the genetic test results. After all, there could be a health problem that could be dealt with before it becomes a major medical issue. I am a participant in the MVP, joined it several years ago.

  11. Harold Frederick Dedo Jr    

    We would like to see the results. This would give us an understanding of our make up. We gave our blood to help everyone but received nothing in return. Please move this forward.

  12. Gale J Haas    

    Many veterans have disabilities and won’t it be helpful knowledge to us and our primary care giver (Medical Doctors) if our genetics study results could assist our medical team in diagnosing some illnesses and the future results of veterans could be made a aware and the veteran could take some healthier choices and in some cases may avoid treatment and less cost to the VA.

  13. Cynthia Deckerhoff    

    I would like to know the results. For example. If It shows that adult onset diabetes could be a problem for me in the future, my diet would change NOW to help prevent it. Thank You! for asking for feedback.

  14. Franc Ly    

    Mike,

    How do I sign up with Dr. Sara Knight for subject study? Please provide contact info.

    Thanks,
    Franc
    USN Retired

    1. Robert G. Bauman    

      Contact your VSO or the VA about the Million Veteran Program.

  15. CuRT haugen    

    I wanted to and ask for my results, but was told no. I can see no reason why I should not have them. If I cannot understand the results my doctor can read them. Also it might help him to keep me well. But I also understand that alot of the time the VA would rather see us die as that way they do not have to pay us for anything. Also might show more about agent orange than they want out.

  16. RICHARD YAGODA    

    Yes. Any knowledge that can prepare me for or possibly avoid future complications would be valuable.

  17. Tom Cooper    

    Definitely would want to to see the results

  18. DAVID GEORGE    

    I am just learning about this testing. Is it available to all Vets who want to get data on their genetics? I’d like to participate

  19. Daniel Kibbee    

    Well having early onset DDD and OA I always wondered why I hurt so much. I believe that I would like to know my results. I think it would only help my children and grandchildren. Preventive Medicine and the great ability the VA resources have are my reason.

  20. Ronald Brovelli    

    I want to know the results and a consultation with a researcher who could help interpret the results

  21. Kevin Fahy    

    I want to know everything about my genetics. That was one of the purposes of my participation in MVP. The sooner the better. I was one of the first wave of participants out of the Boston VA.

  22. Sandy Smith    

    I participated in the MVP, and would very much like to see the results.

  23. James    

    Of course I want to know as it will better prepare me, my doctors and family on dealing with potential health issues. As far as people concerns with privacy, if you are on any social network, you already lost it.

  24. Gary R Eishtadt    

    Yes I enrolled in the MVP program and I would love to know the results of my genetic testing good or bad. Better to know than not to.

  25. Ricardo L Jimenez    

    I WANT TO KNOW ABOUT GENETICS TESTING OF MY SELF

  26. Walter Max Adam    

    There is no question in my mind that the results would eventually be used by some entity, such as the VA, against me.

  27. John    

    I also would like to know all the results from dna testing and I think it would be a huge impact on our lives and health I want to know it all and the sooner the better after all it is our DNA and we should each be able to decide for ourselves!! Count me in.

  28. W. Bernard Browder    

    I’m interested of the results and the response to those results.

  29. W. Bernard Browder    

    I’m interested to see the results and the response to those results.

  30. Dennis Spector    

    I tried to get my genetic results and was refused– I want it– If I make the effort to participate then it would be only polite to give it to me.

    Dennis Spector

  31. STEPHANIE DAVIS    

    Personally, I want to know about my genetic test results. Or at the VERY LEAST, if I want to see the results, I want to do so without a lot of hassle. Those who aren’t interested in their results don’t have to retrieve them or peruse them.

  32. David L McSpadden    

    How can I volunteer for the genetics testing program? I’m a 100% disabled veteran of 29.5 years of Air Force and USSOCOM service. I have multiple medical difficulties (recognized by he VA now). I would prefer to be informed of the genetic testing results if allowed to participate.

  33. Sidney brown    

    Like the idea of getting results. But did not enter mvp study for lots of reasons. Private data is just that. Need assurances of privacy.
    Now about getting data. Yes I would want everything available to me about self.

    At 86 most worrisome items do not apply

  34. Willuam Earl Webb Jr    

    I don’t personally want the genomics information, but if it will help one of my doctors, I want them to have access to it. Maybe a consultation with a genomics expert at the VA would be best. Thanks to the MVP for getting this study moving,

  35. Robert F Gabourel    

    I would like to know the information.

  36. Luther V Leach    

    Read the one right above this. Also your math problem sucks is it 30 divided by 10. Which is what it is in the real world.

  37. Luther V Leach    

    You mention the genetics program and how much you want our inputs but you give absolutely no way to get it to you. So don put stuff in here that you have no intention of us being able to see it.

  38. Daniel Martin Furesz    

    I would love to know if not only can my DNA be mapped and tell me if I have any precursors to any types of cancers and or pre-dispositions to diabetes Alsheimers disease prostrate cancer, colon cancer, brain cancer and or other anomalies of health like being fat or prone to allergies. I would love to know what my sperm count is as I am nearing 71 and although have a lovely healthy and intelligent daughter aged 40 I am thinking about having a son to carry on my unique sur-name and keep the Furesz name alive and well. Also is it within the VA’s capacity to allow me to have my sperm frozen in the event that I die and I haven’t knocked up some young fertile turtle for my sons birth but have contracted to do so posthumously. will the VA first of all allow this and will they fund it. Being U.S.A.F. Retired W-1 and a 100% Service Connected Disabled through a full act of congress I would hope being relatively healthy at my age and extremely intelligent with many skills multiple degrees a plethora of certifications licenses permits and other outstanding qualifications that my unique DNA could be studied and explored to explain what separates me from the regular people who are not over achievers who are not competitive and who do not value the ideal of defending their country so others can live free. In other words what makes me in particular one of America’s less than 1% another way put Americas best and in my case I was the best of the best. As the song goes “Can you tell me Why.” I am interested to learn more and to know if I can participate in any Veteran related studies to help other veterans with my study results. My military covert redacted report speaks volumes of my accomplishments and meritorious service. You can quote me on this and or contact me. I have given you my information and I hope I can hear back from you. Daniel M. Furesz U.S.A.F. Retired W-1

  39. Rich Pyles    

    I have participated and also have a degree in biological science. I would definitely like to know the results when made available, as that could improve my life planning for the future.

  40. Walter Mayfield    

    WHAT DILEMMA???? I WANT TO KNOW AND I WANT TO KNOW EVERYTHING. WHY WOULD I WANT TO BE IGNORANT?? BEING IGNORANT IS STUPID. SO TELL ME, AND TELL ME NOW!!!

    SIGNED,
    ONE OF THOSE MILLION VETERAN PARTICIPANTS.

    I SAID NOW!!

  41. David Sullivan    

    Yup…
    And you didn’t address that…
    Still, others worry that their VA benefits may be affected if they have positive results for certain illnesses.”

Comments are closed.