HIV Testing and Privacy

HIV Testing and Privacy

The ACLU believes that everyone has a right to control the confidentiality of their own medical and other private information, and how that information is used. We also have the right to make our own informed decisions about medical testing and treatment.

If you've been mistreated or harassed based on sexual orientation, gender identity, or HIV status, the ACLU wants to hear about it.
Report LGBT/HIV Discrimination »

Increasingly, public health approaches to the HIV epidemic are eroding individual decision-making, including efforts at the state and federal level to eliminate informed consent to HIV testing and pre-test counseling, and calls for mandatory HIV testing. Because of the continued stigma associated with HIV, as well as the importance of empowering people to make decisions about testing and treatment, we believe efforts to treat HIV like any other chronic condition are misplaced.

We support widespread access to HIV testing, and retaining safeguards to ensure that everyone can control the confidentiality of their HIV status and other inherently personal information, and make informed decisions about HIV testing and treatment, free from government coercion or abuse.

ADDITIONAL RESOURCES ON HIV TESTING

Increasing Access to Voluntary HIV Testing (2007 resource)

In September 2006, the Centers for Disease Control and Prevention (CDC) published updated guidelines on voluntary HIV testing in health care settings. The CDC now recommends that medical providers offer all persons ages 13 to 64 voluntary HIV testing without risk assessments as a routine part of medical care. We agree that increasing access to testing and care is a critically important goal.  But there are ways to increase testing without violating civil rights, and while maintaining important safeguards like pre-test counseling and consent to testing.

Challenge to Change in New York HIV Testing Policy (2006 resource)

Community members are demanding the New York State Department of Health stop illegally collecting medical information on people with HIV and stop its illegal end run around New York law requiring informed consent for HIV testing. The HIV Law Project, the New York Civil Liberties Union, the American Civil Liberties Union and South Brooklyn Legal Services presented a demand letter in May 2006 to the New York Department of Health.

HIV Activists Tell New York Department of Health to Stop Gutting Informed Consent Laws (2006 press release)

HIV activists demanded in May 2006 that the New York State Department of Health stop illegally collecting medical information on people with HIV and stop its illegal end run around New York law requiring informed consent for HIV testing.

Letter regarding HIV testing at the San Francisco City Clinic (2006 PDF)

HIV Testing of Pregnant Women and Newborns (2001 resource)

Proposals for mandatory HIV testing of vulnerable populations have always met strong resistance from defenders of privacy. Testing people against their will and then telling them their HIV status is hardly the best way to offer effective treatment or persuade people to take steps to reduce the risks of transmission to others. But advances in science have led some to reconsider. Learn why the theoretical benefits do not justify mandatory testing.

ADDITIONAL RESOURCES ON MEDICAL PRIVACY

California State Agency Released Confidential HIV Information (2010 press release)

Statistics image