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Insurance, Billing and Protecting Your Privacy

  • In the United States, the insurance landscape is variable and it’s impossible to address every policy and plan which exists; however, genetic counseling is typically covered by insurance.
  • Genetic counselors work as advocates for their patients, and cost/billing will be reviewed as part of the discussion of genetic testing.
  • With regards to genetic counseling and/or testing, your privacy is protected by both HIPAA (Health Insurance Portability and Accountability Act) as well as GINA (Genetic Information Nondiscrimination Act), although these laws have some limitations.

Insurance and Billing

"Does insurance cover genetic counseling?" This is a common, logical question. Unfortunately, it's not possible to simply say "yes" or "no" to this, since every insurance policy is different. It's also important to know that genetic counseling and genetic testing are billed separately, and coverage of one does not guarantee coverage of the other.

With that being said, health insurance usually covers genetic counseling. Insurance companies have different policies, and may cover some tests, but not others. Some cover counseling and testing under specific circumstances, or insist that certain requirements are met before they agree to cover genetic testing.

As part of the discussion of genetic testing, your genetic counselor will review cost and insurance coverage of the relevant tests.

Genetic Counseling and Your Privacy

The Genetic Information Nondiscrimination Act of 2008 (GINA) was designed to protect you and your genetic information from being used in employment decisions and when determining your eligibility for medical insurance. In other words, your genetic information cannot be held against you regarding your job or being hired for a job, or in receiving medical insurance.

However, GINA does not offer protection in all cases. For example, if you undergo genetic testing for conditions such as Alzheimer’s disease or Huntington’s disease and have a positive result, you may have problems purchasing life, disability or long-term care insurance, or receiving coverage. While GINA protects most employees, it does not protect you if you work for a company with 15 or fewer employees.

GINA Resources

For additional resources related to your privacy related to genetic testing, visit the Resources to Help You section of the site and use the "GINA/Privacy Information" filter.