Genetic Testing

kidsmom

I'm just wondering how many of you have had the genetic testing done to determine if you are BRAC1/2 carriers? My mom had BC when she was 57 and now I do at 34. I am scheduled to meet with a genetic counselor but have heard some people say that my status could affect my children's ability to get insurance later. This seems crazy, but I was wondering if you've heard the same rumors?
thanks

Nickig

What? wow...I never thought about that, hmmm....But I don't think any applications for insurance asked me if anyone in my family had/has cancer. Having a postive result does not mean one will get cancer-some carriers never develop it. It just means that person is at a higher risk than the general lifetime risk to anybody. People who test negative can still get cancer.

I just got tested myself. I was dx at 36yrs old- in 2004. No family history- but I did test positive for BRCA 1. So, mom is going to get tested when she can. But I did not ask my counsler about the insurance issue. Will you tell us what your counselor says? Thanks-

Good luck at your consult.
Nicki

Hope_M

You may want to check out www.facingourrisk.org, which is for BRCA1/2 positive folks. It is also a great site for recon issues. They will know the answer to this.

I have heard that your testing results are protected by HIPAA and will not be disclosed to your insurance carrier, but that is just hearsay.

Hope M.

PineHouse

I also heard from different sources that test results are protected and that the law protects you from being discriminated because of that test results.

By the way, Nicki, if you are brca1 positive, you may get it from EITHER mom OR dad.

Nickig

That's good to know. The HIPPA act should protect them...I hope so. Pinehouse- yes I know my dad could be the carrier. Just don't know how to tell him, so am waiting to see what mom tests. Seems silly of me but my dad and I aren't all that close and I don't know if he'd get tested and well...I'll cross that bridge later I guess.

tos

I was just reading in the Cure magazine the following article-
"One Fewer Excuse to not have genetic testing"
"People who inherit a genetic mutation such as brca1 and brca 2 for breast and ovarian cancers, or other familial syndromes, such as hereitary nonpolyposis colorectal cancer, that predispose them to cancer are now protected from genetic discrimination regarding the health insurance coverage and employment. The Genetic Information Nondiscrimination Act (GINA) of 2007 passed the House in April by a 420-3 vote and will likely be passed by the Senate later this year".
"Protection against genetic discrimination exists in a number of laws, including HIPAA and the American Disabilities Act, but GINA clarifies and extends those rights."

kidsmom

Thank you for this information. I feel better knowing there is a law protecting our information. My main concern was in regard to life insurance. You know when you sign the waiver that they have access to your medical records. I was hoping that just having the testing wouldn't somehow make it worse (than trying to get insurance after being DX, haha). And that if I said something to my child's doctor and they put it in her chart and she went to get insurance later on and they saw her mom had some genetic mutation. I'm a worry wart, but I'll be reading up more on the information you posted. Thanks again.

lindawct

HIPPA or no HIPPA, I don't trust that our information is secure. If the insurance companies want to deny you, they'll find a way to do so without it looking like discrimination.

Eight years ago my husband had an issue with a disc in his neck. It took a while, but his orthopaedic doctor told him that once the inflammation was resolved there would be no permanent damage. This past year my husband's employer provided disability insurance. My husband was told that he would have to sign a waiver that excluded any back issues if he wanted to obtain a policy. Upon inquiry, he was told that it related to this neck issue. We obtained the doctor's notes which stated no permanent conditions, but the insurance company denied coverage.

I don't know that I want to chance my daughter's chances of insurability. When I discussed genetic testing with my husband he asked me if my daughter would do anything differently if the testing was positive as opposed to her current intentions now that she knows she has a "family history". Our answer was no, so we figure why wander into the unknown.

It's just another one of those murky issues when it comes to breast cancer. :::sigh:::

Linda