Learn about your legal rights and consider applying for insurance coverage

If you live in the United States, it’s a good idea to learn about your rights under the Genetic Information Nondiscrimination Act (GINA) before you see a genetic counselor. GINA is a law that makes it illegal for health insurance companies and employers to request your genetic information, make decisions using your genetic information, or discriminate against you based on genetic information. This includes your genetic risk for ALS or related conditions. In general, that means:

• Health insurance companies can’t refuse to give you insurance coverage or charge you more money based on your genetic information.
• Employers can’t fire you, reject your job application, or pay you less based on your genetic information.

However, it’s possible that you could experience genetic discrimination in other ways. Keep in mind:

• Life insurance, long-term care insurance, and disability insurance companies can deny your application for coverage based on genetic information in your medical records (including your genetic counselor’s notes). If you’re interested in applying for these types of insurance, you may want to do so before meeting with a genetic counselor.
• GINA doesn’t apply to the Indian Health Service, the military, or companies with fewer than 15 employees.

To learn more about your legal rights under GINA, visit GINAHelp.org. Depending on where you live, your state may offer additional legal protection. Since every situation is different, it may also be helpful to talk with an expert (like a lawyer or genetic counselor) about ways to protect yourself from genetic discrimination.