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All TopicsForum: High Risk for Breast Cancer → Topic: Can positive BRCA testing affect future insurance coverage?

Topic: Can positive BRCA testing affect future insurance coverage?

Forum: High Risk for Breast Cancer — Due to family history, genetics, or other factors.

Posted on: Jan 2, 2008 05:14PM

Roadrunner wrote:

I have great health insurance now, but it's job-dependent, and I worry that when I'm 70 and retiring, I won't be able to get the coverage I need if it's documented that I have the gene. Has anyone considered paying out-of-pocket for the BRCA test, to keep the results private and out of one's medical records? ($4,000 I know....)

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Jan 2, 2008 10:28PM jonemron wrote:

here i was told that you should get all your insurances in place before you have the testing & if you have the gene then you should let your insurance company know. this can play big part as my sister`s family  was having trouble with her insurance company because she found out 2 weeks before she passed that she had brca1 gene and did not notify them they in turn decided not to pay her claim but that has been sorted now.

 also don`t tell your children if you have the gene because they have to declare when filling out insurance forms.if they don`t know then they have not done anything wrong.

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Jan 2, 2008 10:55PM TerryNY wrote:

Go to Myriad's (the company that does the testing) site and they have a section on insurance coverage and privacy laws. 

My intepretation is that no one can get the results without your consent, even the insurance companies.

Terry Dx 2/13/2007, IDC, 1cm, Stage I, Grade 3, 0/7 nodes, ER-/PR+, HER2-
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Jan 2, 2008 11:00PM LisaSDCA wrote:

It is against Federal Law for insurance companies to ask about genetic testing in considering coverage - for you or your children. If you are BRCA positve, tell your families! No hospital or insurance company can get that information without your specific, signed, written consent.



Stage IV mets to brain 11/2008 BRCA-1 positive Dx 1/24/2007, IDC, 2cm, Stage IIA, Grade 3, 0/3 nodes, ER-/PR-, HER2-
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Jan 3, 2008 10:29AM pgiglio wrote:

Hello, Being BRCA1 positive myself, I can assure you It is against the law to release any info on the results of the Test to any insurance company. I have had no problems whatsoever with any insurance company over the last year since I was tested. The results are extremely  private. Good luck with your decision. Regards, Peggy (Pgiglio)

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Jan 4, 2008 05:46PM veggievet wrote:

Dear Roadrunner,

Actually this is a somewhat complicated question and unfortunately the answer is not straightforward.  Actually some of the above answers don't tell the entire story.  FORCE: Facing Our Risk of Cancer Empowered (http://www.facingourrisk.org/) in collaboration with the National Society of Genetic Counselors produced a brochure about Genetic Information, Privacy, and Discrimination which you can view on line or order for free at:  http://www.facingourrisk.org/publications/brochures.html

I want to start by emphasizing that there have not been any documented cases of genetic discrimination in health insurance based on a BRCA test.  Also, these is a federal law called HIPAA that offers some protection against discrimination but HIPAA does have loop-holes which is why FORCE and other nonprofit organizations belong to the Coalition for Genetic Fairness to try to pass comprehensive federal laws against genetic discrimination. In addition most (but not all) states have further laws which protect against genetic discrimination.  But the laws vary by state.  This is one of the reasons why it is good to consult with a genetic expert in your area because most know the state laws and whether or not they have loopholes.

Currently it is not illegal for insurance companies to ask if you have had genetic testing.  And although it is illegal for GROUP insurance companies to discriminate against an individual with a genetic predisposition to disease, it is not illegal for them to discriminate against the entire group (although in most cases that wouldn't be in their best interest).  Again it's complicated and let me restate that there has not been a documented case of discrimination based on BRCA testing.

If you have already had cancer, then you already have a pre-existing condition that likely would eclipse any potential discrimination based on a BRCA test.  If you haven't had cancer, that's a different thing entirely. Either way I recommend speaking with a genetics expert (and make sure they are qualified and well-educated in cancer genetics, not just oncology).  For those who want to understand this more, I'd be happy to refer you to further resources including where to find a genetics expert and where you can find your state laws on genetic discrimination.

One other thing, unlike health insurance, in the area of life insurance there are very few protections (some states have some laws that are protective) against insurance discrimination.  Some health care providers will recommend that people get their life insurance in place prior to having genetic testing.

One other thing, I personally think it's critical to weigh the very real risk of cancer against the hypothetical risk of insurance discrimination before deciding not to have genetic testing.  If paying out of pocket is an option, that's great, but if it's not, I'd hate for someone to forego genetic testing purely due to the fear of genetic discrimination.  Especially someone with a strong family history: the insurance companies already use family history as part of their input in underwriting people.

Please please talk with a genetics expert to get the latest and most up-to-date information on this. 

Feel free to e-mail me at:  sueanddan@att.net if you'd like to chat more or if you still have questions.

Warm regards,


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Jan 5, 2008 04:30AM - edited Jan 5, 2008 04:38AM by jonemron

when you fill out an insurance form for life insurance you are asked if there is any genetic cancers in your family it also the same on health insurance forms.the genetic tests are done as part of research as much as for the families. yes tell your kids but once they know they are at risk of being turned down for insurance. i told all my 3 kids to get their insurances in places before i told them the results of my brca testing.  

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