Progress — 76%
Downside: Discrimination based on your genetic testing results
In the U.S., the Genetic Information Nondiscrimination Act (GINA) makes it illegal for health insurance companies and employers to discriminate against you based on 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 test results. Similarly, employers can’t fire you, reject your job application, or pay you less based on your results.
However, it’s possible that you could experience genetic discrimination in other ways. For example, life insurance, long-term care insurance, and disability insurance companies can deny your application for insurance coverage based on your genetic testing results (or your counselor’s notes). In addition, 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.
You may choose not to get genetic testing for these or other reasons. No matter what you decide, your genetic counselor is here to listen and support your decision.
Some people find that family members pressure them to get genetic testing or try to influence their decision. But at the end of the day, there’s no right or wrong answer. It’s okay to take your time and decide what feels right to you. Remember, you get to choose:
- Whether to have genetic testing
- When to get genetic testing
- What to do with the information you learn from genetic testing
- Who to share your results with
