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Jan 4, 2008 03:46PM
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: firstname.lastname@example.org if you'd like to chat more or if you still have questions.