• 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 that your employer has discriminated against you based on your genetic information, you can contact the Equal Employment Opportunity Commission (EEOC). The EEOC is the federal agency in charge of enforcing the employment rules in GINA. You can also contact the CLRC with any questions about the law.

Health Insurance Protections
In the health insurance context, GINA applies to group health plans and individual plans. Group health insurance plans are generally those that you get through your employer. In this situation, your employer contracts with the health insurance company to offer insurance to an entire group or provides coverage directly to employees. 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.
  
• Cannot request or require you to take a genetic test.
  
• Cannot purchase your genetic information.
  
• Cannot ask you about your genetic information unless it is to make a decision about paying for a requested procedure.
  
• Cannot consider your genetic information a pre-existing condition.

If you feel that a health insurance company has treated you differently because of your genetic information, you can contact your state insurance agency. You can contact the CLRC for the number of your state agency or with any other questions about genetic discrimination in insurance.

What doesn’t GINA cover?
Although GINA regulates health insurance companies, it does not regulate life, long-term care, or disability insurance companies. So, 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.

California, for example, regulates the use of genetic information in life and disability insurance, but not long-term care insurance. Under these laws, the state regulates, but does not ban, life and disability income insurance companies from using genetic test results in order to make decisions about whether to insure you. For example, they cannot require that you take a genetic test without your informed consent and they cannot require a genetic test without paying for the costs. Other states do not have any protections in this area. For example, Illinois does not have any laws regulating the use of genetic information in these types of insurance.

Helpful Resources When Considering Testing
Considering whether or not to get genetic testing can be a difficult decision, but there are many people and resources available to help you make the decision. You can always talk to family, friends, your doctor, or a genetic counselor to help you determine the right choice for you. For more information about GINA, genetic discrimination, and the legal implications of genetic testing, you can contact the Cancer Legal Resource Center’s national Telephone Assistance Line (866-THE-CLRC). Additionally, three genetic organizations (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. This website is www.ginahelp.org.

Genetic Information and Healthcare Reform
Over the past year, there has been a great deal of discussion about changing our healthcare system. In March 2010, Congress passed the Patient Protection and Affordable Care Act (PPACA), otherwise known as healthcare reform. The bill itself is over 1000 pages long, so it includes a lot of information and trying to figure out what is most important can be very overwhelming. So, let’s focus on what is most important in the bill for you – a young woman at high-risk for breast and ovarian cancer.

Here are some of the provisions in the new healthcare reform act:

Preventative Treatment
One of the really exciting changes in the healthcare reform bill for women with a high-risk for breast and ovarian cancer is a new rule about preventative treatment. Under the reform, all plans issued on or after September 23, 2010, must cover certain preventative screenings. Additionally, your insurance company must cover these screenings at no cost to you. That’s right, this means that these screenings will be FREE; no co-pays, and no deductible requirements. There are many screenings included in the list that must be covered. They include: BRCA counseling about genetic testing for women at higher risk, breast cancer mammography screenings every 1 to 2 years for women over 40, breast cancer chemoprevention counseling for women at higher risk, and cervical cancer screening for sexually active women.

Stay Covered Until 26
Another major healthcare reform is that you can now remain on your parent’s employer sponsored health insurance plan until you are 26. You can stay on your parent’s plan whether or not you are in school and whether or not you are listed as a dependent on their tax forms. You cannot, however, be eligible for your own employer’s health insurance plan.

Pre-existing Conditions
If you have a medical condition before you apply for insurance this is called a pre-existing condition. Having a pre-existing condition often makes it difficult for you to get individual health insurance because companies are likely to deny you insurance based on your past medical history. Beginning in September 2010, health insurance companies are no longer allowed to deny health insurance coverage to children under 19 based on their pre-existing condition. For those of you who are 19 or older, you may be thinking, what about me? Healthcare reform also bans insurance companies from denying insurance to an adult with a pre-existing condition, but this part of the bill doesn’t go into effect until January 1, 2014.

One important thing to keep in mind though, is that genetic information cannot be considered a pre-existing condition under a separate law, the Genetic Information Nondiscrimination Act (GINA). So, if you are at high-risk for breast or ovarian cancer due to a family history of cancer or a genetic test result, your insurance company can’t treat this as a pre-existing condition, no matter how old you are.

High Risk Plans
So, what do you do until 2014, if you are 19 or over and do have a pre-existing condition? For people who fall into this category, the healthcare reform bill created a system of high risk health insurance plans. Some states already have these types of insurance plans. You can call the CLRC for more information about the options in your state. The healthcare reform bill created a federal high risk plan option. To be eligible for this program you have to be a US Citizen or lawfully present in the US, have a pre-existing illness or condition that makes it difficult for you to get insurance, and you must have been uninsured for the last 6 months.

Elimination of Lifetime Limits
Many people never realize this until they hit their limit, but prior to healthcare reform, many insurance policies had both annual and lifetime limits on their plans. Annual limits meant that once the insurance company had paid a certain amount of benefits, such as $75,000 in one year, they would no longer pay any benefits for that person for the rest of the year. Similarly, once a person reached their lifetime limit, the insurance company no longer would pay any benefits. Unfortunately, for a cancer patient, these limits were often easy to reach.

Now, an insurance company can no longer place lifetime limits on an insurance plan for essential health benefits. The rules for annual limits will be implemented gradually. Beginning now, all health insurance plans, other than individual plans from before March 23, 2010, can only set annual limits for essential health benefits. However, beginning in 2014, no insurance company can have annual limits on their plans.

Banning Rescissions
Before healthcare reform, many insurance companies unfortunately had procedures to try to take away a person’s health insurance just when they needed it the most. Under this system, if a person got sick, the insurance company would go back through their initial application with a fine-tooth comb and retroactively cancel the insurance policy if they found any mistakes or omissions. They would do this whether or not the mistakes on the initial application were intentional or related to their current medical condition.

Now, an insurance company can only rescind, or cancel, an insurance application if they find fraud or intentional misrepresentation of material fact. So, this means that unless you purposefully lied or intentionally failed to tell the insurance company something on your application, the company can’t just pull the rug out from under you because of an unintentional mistake.

Appeals Process Requirements
Now, sometimes you don’t agree with the decisions that your health insurance company makes. Healthcare reform changes the rules about the appeals processes in health insurance in two ways. First, all insurance plans issued after September 23, 2010, will have to have an internal appeals process. This means that the company has to set up a system for you to appeal your decision through the insurance company. Often times these processes have multiple levels of appeal within the company. Second, every state is required to create an external appeals process if they don’t have one already. This means that if you still don’t agree with the insurance company’s decision after you have appealed through the internal process, you can appeal to an independent review organization through your state’s insurance agency. The decision of that independent review organization is binding on the insurance company.

There are many other changes that will come about in the next four years with healthcare reform, but these are some of the highlights that are especially important to you. If you would like more information about healthcare reform, the federal government has created The Portal, at www.healthcare.gov, which gives comprehensive information about the new law. You can also contact the CLRC for more information at (866) 843-2572 or www.cancerlegalresourcecenter.org.

DISCLAIMER: This publication is designed to provide general information on the topics presented. It is provided with the understanding that the author is not engaged in rendering any legal or professional services by its publication or distribution. Although these materials were reviewed by a professional, they should not be used as a substitute for professional services. The CLRC has no relationship or affiliation with the referral agencies, organizations or attorneys to whom we refer individuals. Resources and referrals are provided solely for information and convenience. Therefore, the CLRC disclaims any and all liability for any action taken by any entity appearing on the CLRC’s resource and referral lists.