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Genetic Testing, Insurance and Privacy

Privacy and HIPAA

Thanks to the Health Insurance Portability and Accountability Act of 1996 (HIPAA) your medical records, including your genetic test results, are considered private.  In fact, even if a physician or genetic counselor knows that one of your relatives has Lynch syndrome prevents them from disclosing this information to you, despite the fact that it could mean you have inherited the condition. HIPAA is a privacy rule that provides federal protections for personal health information. The HIPAA legislation provides a variety of different and worthwhile protections for consumers; however, one drawback of this important legislation is that it means healthcare practitioners are not at liberty to divulge private medical information about patients to the patients’ family members.

Know Your Rights

As a patient and healthcare consumer, you have rights. As mentioned above, the HIPAA privacy rule protects your private health information. Another important piece of legislation is the Genetic Information Nondiscrimination Act (GINA). GINA protects individuals from genetic discrimination—both by health insurance companies and employers. This legislation means you are free to use genetic information to manage your health without the fear of being denied coverage because of a genetic condition.

GINA strictly prohibits the following:

- Health insurers may not require individuals to provide genetic information for decisions regarding eligibility, coverage, underwriting, or premiums (except in cases where a claim is appropriate only if there is a known genetic risk).
- Health insurers may not use genetic information to make enrollment or coverage decisions.
- Health insurers may not request or require that an individual or a family member undergo a genetic test.
- In the Medicare supplemental policy and individual health insurance markets, genetic information cannot be used as a preexisting condition.

GINA also provides protection from employment discrimination based on genetic information.

What GINA does NOT do:

- GINA does NOT protect against discrimination in life, disability, or long-term-care insurance.
- The health insurance provisions of GINA do NOT apply to members of the U.S. military, veterans obtaining healthcare through the Veteran’s -Administration, the Indian Health Service, or federal employees obtaining healthcare through the Federal Employees Health Benefits Plan.
- GINA does not restrict genetic services, the practice of medicine, or the authority of healthcare professionals, whether or not they are affiliated with a health plan or issuer or an employer. In other words, clinicians and healthcare providers can recommend genetic testing for the purpose of an individual’s medical benefit.
- GINA does not preempt state law; it is a baseline for protection against discrimination.

It is important to be informed prior to undergoing genetic testing. To learn more about this legislation and to read the entire act, visit the Coalition for Genetic Fairness.