Insurance; Is There Risk With Genetic Tests

[linda-r]

I finally got authorization from insurance for celiac serology and genetic testing for my daughter. Is there risk that insurance companies in the future may use her genetic profile to deny coverage or charge more for coverage? Has anyone had any experience or thoughts on this subject?

I had previously posted that she had a negative biopsy, but although her villi were normal, she did have slight irritation of the stomach lining. Her H. pylori has been repeatedly negative. She has had reflux and abdominal pain since age 4 and occasional Reynaud's episodes the last 2 years.

Thank you for your insight. You have been very helpful!

Note: I had posted this a few minutes ago and it did not appear. I apologize if it shows up twice.

[Amyleigh0007]

I did my genetic testing through Enterolab. I do not plan on turning it into my insurance so they will never know about it. It cost $174 and that included the $25 shipping charge. Not only did I learn about my genes but it also gave me information about my daughter (my son has Celiac so there was no question about him). We now know she has a 50% chance of receiving my Celiac gene and 100% chance of receiving my gluten sensitivity gene. I also learned that both my parents have the gluten sensitivity gene although they are both in denial! It was well worth the $174.

[linda-r]

I am wondering if maybe I should have the genetic portion done through Enterolab without using the insurance company. I could still have the serology tests done by Prometheus while still protecting her genetic privacy. I am going to ponder this for a while. Anyone else have any thoughts? Does Enterolab have a reputaion for reliable results?

[Jestgar]

There is no Celiac gene. The HLA haplotypes are only associated with Celiac, not causative. Like blond hair is associated with Norwegians. If you are blond, it does not necessarily mean you are Norwegian, and if you are Norwegian, it does not necessarily mean you are blond, but they are associated: many blonds are Norwegian, and many Norwegians are blond.

[linda-r]

Jestgar,

Your statement implies that since the gene is only associated with celiac, and that the general populace has a 30% presence of these genes, then perhaps there is little risk of discrimination from insurance companies.

Prometheus only runs the genetic test if all serologies are negative, so the presence of genetics alone may not carry a lot of weight in the insurance world. The absence of the gene would make the presence of celiac unlikely, if I am understanding this issue correctly.

[captaincrab55]

I'm not an Insurance wizard, but I was always told it was best if One was diagnosed when they had insurance.. IMO, it would be best to be diagnosed when One has insurance and insurable for that as long as One had insurance. Some health issues do have limits and some coverage changes with different insurance companies....

It would seem that Insurance companies could check forms to get some information on members and connect to real names if that it was legal. I would think that One should be more concerned that a future Employer could harvest this information.

I now wonder if a Pilot can pass his Physical with CELIAC? Is there a topic about employment yet?

[Jestgar]

Jestgar,

Your statement implies that since the gene is only associated with celiac, and that the general populace has a 30% presence of these genes, then perhaps there is little risk of discrimination from insurance companies.

Prometheus only runs the genetic test if all serologies are negative, so the presence of genetics alone may not carry a lot of weight in the insurance world. The absence of the gene would make the presence of celiac unlikely, if I am understanding this issue correctly.

Less likely. And you can argue with an insurance company that an association does not equate to disease, and therefor, there is no basis for discrimination.

I'm also fairly certain that it's not legal in the US to discriminate based on genetics, but I don't know why I think that.

Here's a related article:

Open Original Shared Link

Here we go:

Open Original Shared Link

[linda-r]

Thank you all for your responses. I now feel more comfortable having the testing done.

[lizard00]

It's protected under the GINA Act of 2008.

Open Original Shared Link

Jess, I just realized you had a link in there, too. Looks like it's to the same or similar info.