What should my next steps be (genetic testing and insurance)?
June 14, 2013 12:33 PM   Subscribe

I have learned there is a 50% chance I have inherited a genetic disease. I would like to be tested to see if I actually have the faulty gene, but have a few concerns as to insurance implications. Any help would be much appreciated.

First, a little background:

-The disease in question is currently incurable, and those with it eventually become incapable of caring for themselves.
-If I have the gene, there is a 100% I will get the disease.
-I am young, and would presumably not start showing symptoms of the illness for roughly 20-30 years.

I am currently unemployed, but will be starting work in a few months for a state government. As far as I can tell, I will be getting health insurance and will have the option of buying into life insurance, long-term care insurance and disability insurance.

I have no spouse or children, but I do have a sibling I would like to ensure is cared for if it turns out I have the gene (sibling has a neurological condition, and is also at 50% risk of the gene). I would additionally want to retire early if it turns out I have the gene, so I can enjoy myself to the fullest before the symptoms render that an impossibility.

I really want to get tested, both for peace of mind and in order to properly prepare for the future. I have been given the option to get tested as part of a study, and was informed that they could withhold my results until I ask for them.

Given all of this, here are my specific questions:
1. Could I get tested now, but avoid insurance issues by not getting the results until after I have insurance? Or would the testing alone create a problem during the application process?
-Speaking of, is my 50% risk (and/or knowledge of that risk) already a potential issue?

2. Can a sibling be made the beneficiary of a policy? What if they have a guardian - what say would the guardian have regarding the payout?

3. Should I look into private insurance (as well/as an alternative to) the employee insurance?
-Alternatively, how would I determine what the best insurance plans are for my situation? I have zip knowledge in this area...

I'm aware my wording is vague, but I'm trying to keep identifying features to a minimum for now as a preventative measure. If it turns out more information is needed, please feel free to let me know. Also feel free to point out if there's anything I may be missing (insurance-wise or otherwise). Throwaway e-mail is amfsakaway@yahoo.com
posted by anonymous to Grab Bag (5 answers total)
Where are you located? Assuming it's not overturned, the ACA will soon make it illegal for your sex or preexisting conditions to affect your insurance rates in the U.S.
posted by jsturgill at 12:36 PM on June 14, 2013

I would really, really recommend speaking with a genetic counselor about this. You can likely locate one through this website. They are trained in teaching people about the technology of the testing itself (how reliable, how it works, etc.), but also deal with the psychological and practical aspects of what the testing will mean. This could cover anything from possible emotional reactions to the nuts and bolts about what it might mean in terms of insurance coverage and other logistics. It may be that the study you have would be able to link you up with a counselor too.

With that input you can make a more informed decision about the benefits and drawbacks of pursuing testing that are specific to your situation. You could also private pay for this visit, and as you haven't pursued any testing first it would not hamper future insurance coverage. As jsturgill mentioned, in the future it is not supposed to hamper your ability to get insurance, but in the present that situation is still a bit nebulous. I'm not sure if you would have to disclose testing if you didn't have the results, but policies and disclosures may vary.

Another resource for discussing this would be online support communities for the genetic disorders. The folks there would be able to give you some insight into what the testing has meant for them and how it impacted insurance.
posted by goggie at 12:52 PM on June 14, 2013 [7 favorites]

If you have the test and you do have the gene for the disorder, it won't affect your ability to get health insurance (without the Obamacare change with respect to pre-existing conditions, they could probably find a different reason to reject you, like the cold you had in 6th grade and didn't disclose, but that's going to be moot soon), but it can affect your ability to get life insurance, long term care insurance, etc.

I would not advise paying privately for the test before you have these things in place -- if you do test positive for the gene and fail to disclose it in the insurance application, the insurers will drop you if they find this out. For instance, suppose there's an issue with your long term care insurer paying for your care, a family member calls them to sort things out, and mentions that you got the insurance after the diagnosis. Oops, there goes the coverage. Much safer to get the long term care insurance, have the test, and then drop the insurance if you test negative.

Seconding the recommendation for a genetic counselor. I'm marginally familiar with this stuff because I know people who are in similar situations, but a professional will know a lot more. (In fact, if you're talking about the condition I think you are, I believe you have to go to a genetic counselor anyway before they'll give you the test, because the long term prognosis is as dire as you've described.)

And I hope that when you do eventually get tested, you don't have the gene!
posted by Blue Jello Elf at 1:14 PM on June 14, 2013 [1 favorite]

1. Why do you need to? Is this disease going to do something to you in the next few months? Would knowing a few months earlier actually affect your life? I'm guessing not since you are fine with waiting until after you have insurance to get the results. Don't tempt fate, just wait to get tested until you have insurance. Once 2014 hits, it won't matter anymore anyway because of the ACA.

2. Yes, you can make anyone you want the beneficiary of your life insurance. How much say the guardian has depends on the guardianship arrangement.

3. We can't answer this without knowing what the plan you are going onto looks like. Probably not though, government insurance plans tend to be fairly rich. When you look at your new insurance plan look for the maximum annual out of pocket $ amount. Once you hit that number your insurance covers the rest of your expenses for the year. You can look at additional private insurance but the rates for those are high and I doubt you would end up saving any money that way.
posted by magnetsphere at 1:18 PM on June 14, 2013

Memailed you...
posted by kuanes at 4:36 PM on June 14, 2013

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