Blah! Not my favorite subject but one that is obviously super important as it affects various insurance applications. We had to be sure we were not affected so here is some of the information I have gathered.
These are the facts as I understand them and please note: I am not a lawyer nor a doctor so please check the laws in your state (or country) that may affect you legally and medically.
The GINA (Genetic Information Nondiscrimination Act) was enacted in 2008. It is “designed to prohibit the use of genetic information in health insurance and employment”.
It does not however cover life, disability and long-term care insurance. There are other laws on the books that differ from place to place that do address that to highly varying degrees. I found this state chart on the NCSL site (National Conference of State Legislature) that goes over restrictions and requirements in more detail.
Some of the protections under GINA with regard to health insurance include the following: (via Beowolf)
- Premiums or contributions to a group health plan cannot be increased based on the genetic information of an individual(s) enrolled in the plan.
- Insurers cannot require an individual or family member to undergo a genetic test before enrollment in a group health plan.
- Insurers cannot request, require, or purchase genetic information about an individual before the person’s enrollment in a group health plan or in connection with that person’s enrollment in the plan.
- Health insurers cannot use genetic information as the only basis upon which to claim a pre-existing condition is present and, therefore, to deny coverage.
Some of the protections under GINA with regard to employment include the following:
- Employers cannot refuse to hire and cannot fire individuals based on their genetic information.
- Employers cannot discriminate against employees with regard to salary, terms and conditions of employment, privileges, and opportunities for the future because of their genetic information.
- Employers cannot request, require, or purchase genetic information about an employee except under specific circumstances.
- Employers cannot disclose an employee’s genetic information except under specific circumstances.
While all this is quite daunting and confusing, your HR department or health insurance broker should help you in private.
Here is a great article about Genetic Discrimination at the National Human Genome Research Institute that is worth reading if you need more information or have concerns. You will also read at this link that GINA does not apply to employers with fewer than 15 employees or the US military. Please check it if you are unsure about your status or the insurance company you are applying to.
Also the Supreme Court (SCOTUS) ruled today in case 12-398, that companies cannot patent parts of naturally-occurring human genes. This ruling, I think, will open the door for many other companies to offer the BRCA test and that will bring the price down!
We will add more information as we discover it. ~
BRCA2: In This Together 
Wow Jeff, you and Bonnie are the best people to run a blog like this! Not only are you informative but so thorough. Great job bro.
Thanks Marcy!
Thank you for sharing both this information and the process you’re going through. I know it’s not an easy thing to do. I’m about to have the BRCA tests because of my extreme family history with cancer. I’m a high risk for breast and ovarian cancer. On both a practical and emotional level, your willingness to share this journey is so helpful and strangely comforting. We’re not alone and that’s important to know and feel.
Hi Nancy, I’m glad you found us and please know you are not alone. We’ve also met… years ago when you were curating at that store on Montana. I messaged you via email. Happy to share resources as you begin this journey. Thinking positive thoughts for a negative result…