Is genetic testing reportable?

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Anonymous

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I'm considering a genetic test - after all, health comes first. The test is a blood draw followed by a report that won't involve a doctor's visit. I'm thinking this is not reportable, even though the FAA might be interested in the results of the test if positive.

Without getting too specific, a sibling has been identified with a rare genetic condition which affects the heart and which can be traced through 3 generations, maybe 4. Because it's genetic, I have a 50/50 chance of having it too. I've never shown any symptoms, but let's be careful.

So - reportable or no?
 
If it involves a visit to a medical professional, you'll have to report it (unless a regular visit to your PCP). If you recieve a diagnosis that's listed on the form, you'll have to report it. Would a positive result on this test mean that you have this condition or just that you're susceptible to it? What is the condition?
 
Since it's not employment or health insurance related, too bad GINA does not apply.

But if they find a genetic propensity towards a specific medical condition, that doesn't equate to a diagnosis, does it?
 
You have a 50% chance the test will be negative, so then there will be nothing to report. If its positive, won't you want to see a doctor to treat or monitor it? This will need to be reported for sure. Is the condition capable of interfering with your ability to fly a plane, then should you ground yourself? Too many unknowns with the limited information you have shared. Take a look at this Federal Air Surgeons bulletin: https://www.faa.gov/other_visit/avi...ons/designee_types/ame/fasmb/media/201202.pdf Scroll to the discussion of Huntington's Disease. No, its not cardiac related, but it talks about an airman that received "advanced genetic screening for common familial diseases....She was found to be positive for the genetic marker associated with Huntington’s disease". Airman showed no symptoms. Anyway, you can read about what the FAA's decision was in this case.
 
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This letter to the editor regarding the above case of Huntington's disease. It says pretty much what you are asking. Author wrote "it appears that the pilot described had no disease or symptoms of disease; he only reported the genetic marker for potential (probable) illness in the future. What was the basis for potentially disqualifying this individual who presented no evidence of disease?" The answer is in the article. https://www.faa.gov/other_visit/avi...ons/designee_types/ame/fasmb/media/201203.pdf
 
lsaway said:
This letter to the editor regarding the above case of Huntington's disease. It says pretty much what you are asking. Author wrote "it appears that the pilot described had no disease or symptoms of disease; he only reported the genetic marker for potential (probable) illness in the future. What was the basis for potentially disqualifying this individual who presented no evidence of disease?" The answer is in the article. https://www.faa.gov/other_visit/avi...ons/designee_types/ame/fasmb/media/201203.pdf
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Thanks for passing this on. The Editor's Note tells us everything we need to know about the medical branch: If for the very thinnest of reasons we think you might, you will have to absolutely prove to us you don't. "We have no choice" but to do that.

annonymous, if you can, get tested for your health and go to BasicMed.

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If you get a test but don’t see a doctor to interpret it, you don’t really know what you’ve learned. Do either of your parents have this condition? If not, it’s very likely that a recessive gene surfaced and your actual odds of having it are more like 1:4. If it’s a dominant trait, then your odds are more like 3:4. Or maybe it doesn’t even present by this simple method, called Mendelian inheritance. If you don’t understand what I’ve just said, don’t get the test without a doctor’s oversight.

What would the plan be if you got the test and it showed you had the gene? If all you can do is await symptoms, the genetic test doesn’t get you anything.
 
First - planning on getting tested. Health is always first. It would probably be in conjunction with a regular PCP visit and TBH I'd bet I already know more about this than my doctor does.

What I don't want is to open a medical can of worms with the FAA asking about a condition that has no symptoms to test for. Would they be interested in it? Probably, but what could they do to monitor it? Make me run a stress test every 6 months and ground me prematurely at the first skip? I don't HAVE to have a medical at the moment but would like one down the road, probably in about 5 years. If I had to use BasicMed I could, but it would mean no piloting job path past instructing.

As long as there's nothing medically going on, is reporting a "be on the lookout for..." required?

The condition is called "TTN gene truncation" and the overall outcome is a progressive weakening of the heart muscle. One of the first symptoms is atrial fibrillation. As far as I know, there is no preventative treatment so it's an informational thing, like saying "your starter is showing signs of weakness, you'll want to watch it and replace it eventually". And, like the starter, the only real treatment is replacement.

Known family with it - sibling and nephew confirmed, my mother also had afib and since it's genetic she is probably the source. We suspect my mother's father who died of a heart attack, but that was long before anyone thought about these things. Less than 1% of the population has this, lucky us.
 
Lindberg said:
If it involves a visit to a medical professional, you'll have to report it (unless a regular visit to your PCP).
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Sorry, wrong answer. You have to report regular visits to your PCP as well. Only routine DENTAL and VISION visits along with other FAA medical exams (as well as things related to a special issuance) are exempted.

Having a predisposition to cardiac issues shouldn't be a problem. The FAA doesn't get wrapped around high cholesterol or half a dozen other things. Now if you do get aFib, then you have issues.
 
flyingron said:
Sorry, wrong answer. You have to report regular visits to your PCP as well. Only routine DENTAL and VISION visits along with other FAA medical exams (as well as things related to a special issuance) are exempted.

Having a predisposition to cardiac issues shouldn't be a problem. The FAA doesn't get wrapped around high cholesterol or half a dozen other things. Now if you do get aFib, then you have issues.
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This. They don't need to report a disposition toward something. They should absolutely report if they develop the problem.

They also do not need to report the details of what was discussed during a regular PCP visit.
 
Anonymous said:
As far as I know, there is no preventative treatment so it's an informational thing, .
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If there is no treatment for it, why is it so important to test for the gene? Make lifestyle choices that promote strong cardiovascular health regardless of what genetic test says. Is knowing you have the gene going to impact how you live your life? On my last visit with my doctor, she said that if you dig deep enough into genetic testing, you will always find something. Most of the time what they find doesn't have any treatment for it anyways. So unless you are showing symptoms, it's a waste of money. Those are the words of my doctor, and it seems sensible to me.
 
lsaway said:
If there is no treatment for it, why is it so important to test for the gene? Make lifestyle choices that promote strong cardiovascular health regardless of what genetic test says.
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And bear in mind that while the uses of DNA data today are limited, back in the 1970s and early 80s every piece of mail to or from a U.S. military member was likely to have their SSN on it, as did their duffel bags and a lot of other stuff. Who knew that SSNs would become a primary way to forge someone’s identity for various forms of thievery? Do you trust the company to whom you’re sending your DNA, and all of their employees and the string of other companies that will acquire and split up and buy their databases over the next few decades?

I don’t.
 
DaleB said:
And bear in mind that while the uses of DNA data today are limited, back in the 1970s and early 80s every piece of mail to or from a U.S. military member was likely to have their SSN on it, as did their duffel bags and a lot of other stuff. Who knew that SSNs would become a primary way to forge someone’s identity for various forms of thievery? Do you trust the company to whom you’re sending your DNA, and all of their employees and the string of other companies that will acquire and split up and buy their databases over the next few decades?

I don’t.
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I do. My DNA profile is everywhere. It's volunteered to law enforcement to use. No big deal. Someone could easily collect yours without you knowing, anyway; perhaps they have.
 
Anonymous said:
As long as there's nothing medically going on, is reporting a "be on the lookout for..." required?
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No.

Look at the form. There's no question that asks about conditions you might get in the future.
 
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flyingron said:
Sorry, wrong answer. You have to report regular visits to your PCP as well.
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You do not have to report multiple visits to the same professional for the same condition. I've always put my PCP on one line and just written PCP and "multiple visits." No AME has ever had an issue with that. Maybe some folks don't see their PCPs regularly enough for it to matter.
 
DaleB said:
Do you trust the company to whom you’re sending your DNA, and all of their employees and the string of other companies that will acquire and split up and buy their databases over the next few decades? I don’t.
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That's why when we got genetic testing, we used your name, and an address in Canada. By the way, you tested fine, no worries!

Paul
 
PaulMillner said:
That's why when we got genetic testing, we used your name, and an address in Canada. By the way, you tested fine, no worries!

Paul
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Great idea! By coincidence, I used your pee the last time I got drug tested. You’re not smoking weed, but it looks like you’re pregnant.
 
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