Understanding your individual risk factors, family history, or genetic predisposition for cancer is the first step in taking charge of your health. While this information can be empowering, it can also raise many questions and pose some legal concerns. For example, how could other people use my genetic information? Am I protected from discrimination?
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.Collapse [ - ]
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.
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:
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.
GINA applies to private employers with fifteen or more employees, as well as some federal employers. Under GINA, employers:
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.Collapse [ - ]
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:
For more information about healthcare reform, visit the federal government’s The Portal, which provides comprehensive information about healthcare reform.Collapse [ - ]
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.
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