Legal Resources

Genetic information includes an individual’s family history, the results of any genetic tests, or the use of genetic services, such as genetic counseling or participation in genetic research. For example, a family history of breast or ovarian cancer and results from a BRCA genetic test for breast cancer both are considered genetic information.

Information about your current health status is not considered genetic information. So, your family history and genetic test results are genetic information, but an actual cancer diagnosis and information about your present condition, such as current medications you are taking, would not be genetic information.

Genetic discrimination occurs when an insurance company or employer treats an individual differently based on her genetic information. The Genetic Information Nondiscrimination Act (GINA), passed in 2008, makes genetic discrimination illegal in health insurance and employment.

Health Insurance Protections

GINA applies to group health insurance plans and individual plans. Group plans are generally those that you get through your employer. An individual plan is one where you contract directly with the insurance company yourself, rather than through an employer or group. Under GINA, insurance companies cannot:

• Restrict enrollment or adjust premiums, contribution amounts, or coverage terms based on genetic information.
• Request or require you to take a genetic test.
• Purchase your genetic information.
• Ask you about your genetic information unless it is to make a decision about paying for a requested procedure.
• Consider your genetic information a pre-existing condition.

If you feel a health insurance company has treated you differently because of your genetic information, contact your state insurance agency or the Cancer Legal Resource Center.

Employment Protections

GINA applies to private employers with fifteen or more employees, as well as some federal employers. Under GINA, employers:

• Cannot take your genetic information into account when making any employment decisions, such as hiring, firing, promotions, wages, or benefits.
• Cannot request, require, or purchase your genetic information.
• Must keep any genetic information in a private employee file, separate from your normal employee file.

If you believe your employer has discriminated against you based on your genetic information, contact the Equal Employment Opportunity Commission (EEOC).

Although GINA regulates health insurance companies, it does not regulate life, long-term care, or disability insurance companies. Those companies are still allowed to take your genetic information into consideration for insurance decisions. Although GINA doesn’t apply to these companies, many state laws do prohibit them from using your genetic information or regulate how such information is collected and used.

Since Congress passed the Patient Protection and Affordable Care Act (ACA) in 2010, there has been a great deal of debate in the news about how healthcare reform will affect our society. The bill is over 1,000 pages long, so we’ve put together a guide to help you understand your rights and how the law will allow you to become more proactive with your breast and ovarian health.

Below we will focus on what parts of the bill  are most relevant to young women at high risk for breast or ovarian cancer. Read our comprehensive overview here.

The Affordable Care Act:

• Requires all health insurance plans issued on or after September 23, 2010 to cover certain preventative screenings at no cost to you (no co-pays or deductibles).
• Allows you to remain on your parents’ employer sponsored health insurance plan until you are 26 years old, regardless of whether you are in school or listed as a dependent on their tax forms.
• No longer allows companies to deny health insurance coverage to children under age 19 based on a pre-existing condition.
• Will ban health insurance companies from denying insurance to an adult with a pre-existing condition beginning January 1, 2014.
• Created a federal high-risk plan option for those who have been uninsured for the last six months and have a pre-existing illness or condition that makes it difficult to get insurance.
• Eliminates lifetime limits on health insurance plans for essential health benefits.
• Created new appeals process requirements, making it easier to appeal to an independent review organization through your state’s insurance agency.

For more information about healthcare reform, visit the federal government’s The Portal, which provides comprehensive information about healthcare reform.

For more information about GINA, genetic discrimination, the legal implications of genetic testing, or health insurance contact the Cancer Legal Resource Center’s  national Telephone Assistance Line (866-THE-CLRC). Additionally, the Genetic Alliance, the Genetics and Public Policy Center, and the National Coalition for Health Professional Education in Genetics have teamed up to provide a comprehensive website explaining GINA’s protections.