American Civil Liberties Union

Dispelling Myths: Consent for Testing

What the CDC Says:

• HIV testing must be voluntary.
• Patients must know that testing is planned and be informed that they will be tested unless they decline (“opt out”).
• The patient should be provided information about HIV infection and the meanings of positive and negative test results and be provided an opportunity to ask questions and decline testing.
• General informed consent for medical care is sufficient to encompass informed consent for HIV testing.

What the CDC Does Not Say:

• CDC does not state that people can be tested without their knowledge or without providing informed consent. Informed consent for medical treatment is required by law and by medical ethics.
• Given the CDC’s acknowledgment that testing must be voluntary and informed, its reference to “general informed consent for medical care” appears to relate solely to its view of how consent must be documented.
• Many advocates and others question whether testing under an “opt out” program will be fully voluntary. The CDC has not answered this question.

Dispelling Myths: Counseling Prior to Testing

What the CDC Says:

• CDC recommends that “prevention counseling” not be required prior to testing. It defines “HIV-prevention counseling” as involving individual risk assessment and development of a plan to reduce those risks.
• CDC acknowledges that obtaining informed consent for HIV testing involves providing information about HIV, the risks and benefits of testing, the implications of test results, how test results will be communicated, and the opportunity to ask questions.

What the CDC Does Not Say:

• CDC is not recommending that there be no counseling prior to testing. It recommends only that a very specific form of counseling -- focused on individualized risk assessment and reduction -- not be provided.
• CDC is not saying that all state counseling requirements conflict with its recommendations. In fact, some state laws require that pre-test counseling provide the same pretest information that CDC recommends (an explanation of HIV infection and the meanings of positive and negative test results).

Dispelling Myths: The Status of the Recommendations

What the CDC Says:

• CDC clearly labels these as “recommendations,” not “requirements.”
• CDC acknowledges that some states, local jurisdictions, or agencies have legal requirements related to consent or counseling that conflict with some of the recommendations and that those recommendations cannot be implemented unless such conflicts are resolved.
• These recommendations do not modify existing guidelines for HIV testing in non-clinical settings (e.g., community-based organizations, outreach settings).

What the CDC Does Not Say:

• CDC does not say that these recommendations must be followed.
• CDC does not say that its recommendations are the only means of increasing testing. In fact, it references studies in which increased, non-risk based, testing was achieved without abandoning specific written consent and/or pre-test counseling.