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Confidential & Anonymous Testing

HIV Test Results and Privacy Issues

HIV test results fall under the same privacy rules as all of your medical information. Information about your HIV test cannot be released without your permission. The Health Insurance Portability and Accountability Act of 1996 (HIPAA) ensures that the privacy of individuals’ health information is protected while ensuring access to care. However it is important to note that not all HIV testing sites are bound by HIPAA regulations. Before you get tested be sure to inquire about the privacy rules of the HIV test site as well those surrounding your test results.

Available testing services

HIV tests can be taken either confidentially or anonymously. Most states offer both anonymous and confidential testing, however some states only offer confidential testing services.

  • Confidential testing means that your name and other identifying information will be attached to your test results. The results will go in your medical record and may be shared with your healthcare providers and your insurance company. Otherwise, the results are protected by state and Federal privacy laws.
  • Anonymous testing means that nothing ties your test results to you. When you take an anonymous HIV test, you get a unique identifier that allows you to get your test results. Not all HIV test sites offer anonymous testing. Contact your local health department or 1-800-CDC-INFO (800-232-4636) to see if there are anonymous test sites in your area.

Names-based reporting

Since the beginning of the epidemic, AIDS cases have been reported to state health departments using name-based reporting. This is now also true for HIV cases. This means, if you test positive for HIV or another STD, the test result and your name will be reported to the state and local health department for the purposes of public health surveillance. Only public health personnel have access to this information at the state level and use this information to get better estimates of the rates of HIV in the state. The state health department will then remove all personal information about you (name, address, etc.) and share the remaining non-identifying information with the CDC so they can best track national public health trends. The CDC does not share this information with anyone else, including insurance companies.

If you have concerns regarding who can have access to your tests results, it is important to ask your testing center, about their privacy policies and who, they are required to report a positive result to.

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Frequently Asked Questions

Do the results of my HIV test become part of my medical records?

Yes. Unless you take an anonymous HIV test, your test results (positive or negative) are like any other medical test and are a part of your medical record.

Can my insurance company find out that I took an HIV test, or even drop my insurance coverage for taking one?

Usually laboratories aren’t required to share test results with anyone other than the person tested and the medical professional who ordered the test. This does vary from state to state and among different insurance plans. An insurance company should not drop you for being tested for HIV or even for testing positive for HIV. However, some insurance plans may not cover pre-existing conditions, like HIV.

Additional Resources

Last revised: 06/08/2010