Knowing Your Genetic Rights
Having a genetic condition, like Huntington’s disease, means it is very important to understand your genetic rights. Currently, the federal law providing protections for genetic information is GINA (the Genetic Information Nondiscrimination Act of 2008), and many states have laws protecting the disclosure of genetic information (you can find information about your state here: State Genetic Laws).
It is very important to know that GINA is limited and only protects your rights in terms of access to health insurance and employment – health Insurance companies and employers cannot use genetic information to discriminate against you:
Health Insurance – You cannot be denied health insurance because of your HD or any other genetic condition.
- Forbids discrimination in any aspect of employment
- Job assignments
- Any other term or condition of employment
- Prohibits employers from treating you differently, or less favorably, because of genetic information
- Restricts employers from requesting, requiring, or purchasing genetic information
- Requires that employers keep genetic information confidential
- Illegal to harass a person because of his or her genetic information or the genetic information of a family member
- Illegal for your employer to read your Facebook page with the purpose of finding genetic information
GINA does not provide protections in many areas, including education, housing, right to service from business owners, and, as HD families know all too well, the right to life, disability, and long-term care insurance coverage.