What is known after a genetic test is done will become part of your medical record and will be considered confidential, protected by all the laws that apply in your state and by federal law including the recently passed Genetic Information Nondiscrimination Act (GINA)A law that makes it illegal for health insurance providers to deny coverage, or charge someone more money, based on genetic test results; does not allow forced genetic testing; protects persons who are working from getting fired or not being able to move to different jobs because of genetic information; protects genetic information in tests by keeping it confidential and does not allow employers to ask for results.. The results will remain confidential unless you sign a release giving the hospital permission to share the results. Additionally, the hospital will not provide information to your spouse/partner, children, or other family members if you have not given them permission to do so.

It's up to you to decide if you would like to involve your insurance provider in payment for genetic services. Some insurance plans pay for the testing in full, others pay nothing at all, and still other companies pay a percentage of the "usual and customary" procedure. This means that the insurance company bases their payment upon a dollar value that they believe the service should cost (which may be similar to or different from what the testing actually costs), and then pays a percentage of that.

It is a personal decision to ask an insurance provider for coverage of genetic testing. Some people choose to pay privately for these services. A cancer genetics professional can help you explore insurance options available prior to undergoing BRCA1 and/or BRCA2 genetic testing. These professionals can also help to explain how you are protected under the law. In general, paying for services privately does not change the privacy surrounding the genetic information. The information remains strictly confidential, unless you grant access to it.

On May 21, 2008, President Bush signed into law the Genetic Information Nondiscrimination Act (GINA)A law that makes it illegal for health insurance providers to deny coverage, or charge someone more money, based on genetic test results; does not allow forced genetic testing; protects persons who are working from getting fired or not being able to move to different jobs because of genetic information; protects genetic information in tests by keeping it confidential and does not allow employers to ask for results.. GINA is the first and only federal legislationA law made by government. that will provide protections against discrimination based on an individual's genetic information in insurance coverage and employment settings. Specifically, the legislation protects against genetic discrimination by health insurers or employers by:

• Prohibiting group health plans and issuers offering coverage on the group or individual market from basing eligibility determinations or adjusting premiumsPayments, usually monthly, to an insurance company. or contributions on the basis of genetic information. They cannot request, require or purchase the results of genetic tests, or disclose genetic information.
• Prohibiting issuers of Medigap policies from adjusting pricing or conditioning eligibility on the basis of genetic information. They cannot request, require or purchase the results of genetic tests, or disclose genetic information.
• Prohibiting employers from firing, refusing to hire, or otherwise discriminating with respect to compensation, terms, conditions or privileges of employment. Employers may not request, require or purchase genetic information, and may not disclose genetic information. Similar provisions apply to employment agencies and labor organizations.

The health insurance protections offered by GINA are expected to roll out 12 months after the bill is signed (May 2009), whereas the employment protections will be fully realized in 18 months (November 2009). The provisions of GINA do NOT apply to life, disability, and long-term care insurance.

In addition to GINA, many states have passed specific laws that govern how insurers and employers can and cannot use genetic information.

The following link provides state-by-state information about existing genetic anti-discrimination laws.