Would you do this? (study/blood test)

lite-bright · March 2011

My pedi contacted me a few weeks ago to say that there was an opportunity to participate in a genetic study of autism. DD1 would have two tubes of blood drawn, it would be sent off for study (gene amplification, I think she said?) and we'd get back a report and a call from a genetic counselor about the results.

We didn't have a diagnosis at the time, so DH and I just kind of let it slide. Now we do, I asked my pedi about whether the chance was still available, and I just got a call from the nurse in charge that they have one kit left b/c someone cancelled.

This is supposed to be free -- as in, they collect our insurance info and bill them, but will cover anything that insurance doesn't. I think the study is associated with the University of Utah, but the testing is being done by a company called Lineagen.

Has anyone done anything like this? Would you? Is this a no-brainer that I'm overthinking? I mean, yeah, it'll kind of suck for DD1 to have blood drawn and I'm not sure we would learn anything that would guide decisions on future kids.

I'm kind of torn between wanting to contribute to the science on autism, and not wanting to offer up my kid as a guinea pig, even if it's just her blood. (I'm also so disillusioned with our insurance right now that I'm anxious that somehow we'll be stuck with an outrageous bill.)

I made the appointment for the blood draw since I was on the phone with the nurse, but told her I would have to cancel if DH objects. I'll see what he says when he gets home from work.

mommyof4boys · March 2011

We're in a genetic study right now. Chris' genetic syndrome is associated with autism. We know that his syndrome can be inherited or a fluke so we were tested and if one of us comes back positive then we'll have the other boys tested. They should have sent out consents and both DH and I had to sign that we agreed to this.

I'd say go for it! We know that this isn't helping Chris but will help others. I'd say go for it!

Spockles · March 2011

I would not feel comfortable participating in a STUDY that was going to BILL my insurance for it. Not ok, in my opinion. Even if they're going to pick up the excess that isn't covered by your insurance. It still seems weird to me. If they weren't going to bill your private insurance, then I would definitely do it. I've been in a couple studies before and they didn't need/want my insurance because they legally weren't able to bill ME for tests/procedures associated with the study.

adge1119 · March 2011

i work in research and i agree this does not sound right. many times we will have a patient's clinical visit overlap with some form of research. in this case the patient would be billed for their visit because it is clinically indicated. any testing, etc related to the study would be billed to a special study code that would be paid for out of that specific study's budget.

it sounds like what is happening is similar to how we found our son's genetic mutation. our genetic counselor had to obtain prior authorization to get our insurance to cover our genetic test. the testing isn't run of the mill and only the university in the netherlands has found this mutation and can run it. our insurance did cover the cost. however (even though this is really research related) it wasn't labeled as research. if that makes sense.

if they can assure you that everything will be covered then i would participate if you feel comfortable. my concern would be what would happen if the portion you "owe" did not get processed right and you got a bill. how quickly could they resolve the issue? b/c we all know hospitals send you to collections at the drop of a hat.

lite-bright · March 2011

Okay, so I did some research for clarification.

I think this should've been billed as "an opportunity for cheap genetic testing through a company that collaborates with x-y-z to see if your child has any of the known genetic conditions/markers affiliated with ASD symptoms" rather than a study. Which irks me. I have a phone number for the company and I'll be calling later to confirm, but I don't think there's any formal study. Hence the bill-insurance piece.

The company looks legit, and they do list University of Utah and CHOP as places they've "collaborated" with on the genetic piece, but God only knows what that actually means. Their spiel is that they want to reduce wait-times for autism diagnoses by offering genetic testing that regular pediatricians can order. But they're just getting started, it looks like -- hence the (current and probably temporary) willingness to pick up the tab for whatever insurance doesn't cover.

I can see how that would be useful for the subset of kids with known genetic conditions that are affiliated with ASD (like fragile X) -- but it seems like it would be largely useless at this point for cases like my DD1, where if there are genetic factors involved, scientists don't know exactly what they are yet or are just in the early stages of identifying them.

It's an interesting opportunity and not one that comes along every day to have that kind of testing done at (apparently) low cost, but I'm still leaning against it. She's perfectly healthy, has no physical or facial indicators of any genetic syndromes, and there's no family history of them. I think we just fall into the vast majority of cases where an exact cause just isn't known and may never be.

I guess we could do it just as a sort of check-the-box, we-know-it's-not-because-of-A-B-or-C. Or keep it in mind as a future possibility as genetic research evolves and they know more about causes of ASD. But at least now I know what I'm dealing with!

Thanks for the advice, ladies. It'll help me evaluated any future opportunities.

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