Genetic testing, like all health information, is kept private and is protected by the Health Insurance Portability and Accountability Act – HIPAA. Though genetic testing results would be available to all of your health care providers at The Children’s Hospital of Philadelphia, they cannot be released to outside parties, like, family members, employers or the government, without your written approval.

Another policy that protects our genetic information is called the Genetic Information Nondiscrimination Act — GINA. GINA was passed by Congress to protect Americans from genetic discrimination by health insurance and employers. GINA does not apply to life insurance, disability insurance, or long-term care insurance. GINA also does not apply to employment in companies with less than 15 people, military personnel, or those covered by the Federal Employees Health Benefits Program.

The Affordable Care Act protects from health insurance discrimination based on “pre-existing conditions,” which includes genetic conditions or predisposition to them.