Confidentiality
Confidentiality comes up in different settings such as testing, receiving and providing medical care, obtaining child day care, personal relationships, and employment. There are circumstances when your HIV status may not be revealed without your written permission. This section discusses who has the right to know your HIV status and when you should disclose it. 
What’s an anonymous test? What’s a confidential test? What’s the difference?
There are two kinds of HIV tests: “anonymous” and “confidential.”
Anonymous tests. If you have an anonymous HIV test your name will not be recorded. Although your results are anonymous and not linked to your identity, the State Epidemiologist will receive your results for public health purposes.
Confidential tests. If you have a confidential HIV test, your positive test results, name, and demographic information will be revealed to a limited number of people who cannot lawfully share the results with anyone, except as specified by law. The results are protected from the general community unless you give permission for the release. (See Wis. Stat. § 252.15(5) (2007))
Who are the limited number of people? Your health care provider, public health specialists who track diseases for the government, and state health department staff. The state health department will send you a letter asking you to participate in the HIV Partner Counseling and Referral Services Program. If you wish, this program will confidentially inform your sexual or needle-sharing partners that they may be at risk for HIV.
Where are confidential and anonymous tests offered? Certain test sites across the state offer anonymous testing. See the Resources chapter in the back of this guide for contact information. If your doctor tests you for HIV, the test will be confidential – not anonymous. Anonymous test sites may offer both confidential and anonymous tests. If you desire an anonymous test be sure to specifically ask for one.
Do I have to tell my HIV status to anyone?
No. The law does not require you to disclose your HIV status to anybody.
Should I tell anyone else that I am HIV-positive?
It is best to reveal your HIV status only to people you can trust. Given the discrimination and fear that often goes hand-in-hand with HIV, you should think about the consequences of revealing your HIV status before you tell someone.
Deciding whom to tell that you’re HIV-positive can be difficult. There are some people you will want to tell. Certain friends or family members may give you support and your doctor can help you stay healthy.
There are many people you may not want to tell. Coworkers, school officials, certain family members, or others who may react badly or discriminate against you if you tell them. Your right to confidentiality is your best weapon against discrimination. If people don’t know that you’re HIV-positive, they can’t discriminate against you.
You should tell anyone who you may have exposed to the virus so that they may get tested and receive treatment. This includes sexual partners and anyone with whom you have shared needles.
The State Department of Health and Family Services has a program called HIV Partner Counseling and Referral Services. At your request, this program will inform your partners that they may be at risk for HIV, so you won’t have to tell them. Here is the benefit of the HIV Partner Counseling and Referral Services: it will not give away your name to persons you may have put at risk. Instead, the program will tell those persons they may be at risk because of possible exposure through an HIV-infected person. To contact HIV Partner Counseling and Referral Services, see the Resources chapter.
Note that if you do share needles or have unprotected sex without telling your partner and you know you are HIV-positive, you may be sued or charged with a crime. See the chapters on Criminal Law and Civil Lawsuits for more information.
AIDS service organization case managers are available to help you make these kinds of decisions. (See Resources chapter for phone numbers.)
How do I give consent for somebody else to receive my confidential results?
When you are tested, you may be given an informed consent form. This form contains your name and lists the limited circumstances in which your results may be disclosed without your consent. You may list anyone you want to receive your results on this form. You may also limit the time that your consent remains in place. Once you sign the consent form, you have given consent to disclose the results to the persons you listed.
Who has the right to know my HIV test results?
Your HIV test is private. Generally, for another person to lawfully reveal your HIV test results to anyone else, that person must have your written consent to do so. However, your signed consent is not required to disclose your HIV test results to: - your health care providers;
- a blood bank or plasma center that processes your blood;
- the State Epidemiologist for research and disease tracking purposes, and the state’s HIV Partner Counseling and Referral Program;
- coroners under limited circumstances;
- funeral directors;
- a sheriff, jailer, or corrections worker (for housing purposes) if you are in jail or prison;
- your parent or guardian, if you are under age 14 or are legally incompetent;
- the victim of a sexually related crime that you either committed or are charged with, and the victim’s doctor. If the victim is age 14 or younger, the victim’s parents may be told (see Wis. Stat. § 968.38 for more information);
- a health care worker, paramedic, firefighter, peace officer, jail keeper, corrections officer, or police officer who was significantly exposed to the virus;
- your foster care provider and foster parents;
- your health care power of attorney agent; and
- anyone with whom your doctor knows you had sexual contact or shared needles, if the disclosure is made by your doctor. This is optional and not required for you doctor, but if your doctor chooses to tell, your doctor must do so through the State Epidemiologist (see Wis. Stat. § 252.15(7m) (2007)). However, if you die, your doctor may inform known sexual and needle-sharing partners directly (see Wis. Stat. § 252.15(5)(a)(14) (2007)).
See Wisconsin Statute § 252.15(5) or consult with an attorney for more information on exceptions to confidentiality (see the Resources chapter).
If another person discloses my HIV test results or HIV/AIDS status without my consent, what are the penalties?
HIV Test Results: Wisconsin law makes it illegal for any person to reveal your test results to another person without your written permission, except as provided by law. Anyone breaking this law may face up to $25,000 in civil or criminal fines, up to nine months in jail, and suspension or termination from their job if they are a state employee. You may ask the district attorney to bring charges if you believe your confidentiality has been violated. Whether your test results are revealed on purpose or though negligence is also a factor (see Wis. Stat. §§ 252.15(8-10) (2007)).
If I choose to tell someone that I am HIV-positive, can I prevent that person from telling others? What are the penalties if someone reveals my HIV status?
HIV Status: It is difficult to keep someone from telling others about your HIV status. Unlike HIV test results, HIV status is any reference that you are living with HIV/AIDS – it does not have to be a piece of paper listing your HIV-positive test result. Your rights may be violated if another person discloses your HIV/AIDS status to other people without your permission, although it may be very difficult to prove.
The legal protections you have available to you are only remedial; they may help you to punish a person, but they cannot prevent the disclosure of your status in the first place. You must be very careful before you decide to disclose your HIV status to another person.
If someone discloses your HIV/AIDS status or HIV test results, you may be able to sue for damages, including psychological harm, depression, and damage to your reputation. You may also be entitled to damages, including relief to prevent and restrain the invasion of your privacy, compensatory monetary damages, and attorney fees. Each case is different. (See Wis. Stat. § 252.15(8), (9) (2007)) A person who is proven to give publicity to the details of one’s private life without any legitimate public purpose may be liable for the damages listed above (see Wis. Stat. § 995.50 (2007)).
If you know someone who is telling other people that you have HIV/AIDS or disclosing your HIV test results without your consent, it is best to consult with an attorney (see the Resources chapter).
What if my health care provider discloses my HIV test results or HIV/AIDS status?
If a health care provider discloses your HIV test results or HIV/AIDS status to someone without your permission, you may be able to file a lawsuit or press for criminal charges against the health care provider, unless the disclosure meets one of the exceptions to the HIV confidentiality law. A health care provider may be fined or imprisoned for intentionally disclosing your results without your permission and also may face suspension or discharge from employment. A health care provider includes but is not limited to licensed social workers, doctors, nurses, dentists, pharmacists, dieticians, and psychologists.
Can a court order me to reveal my HIV status?
Yes, in limited circumstances. If you are charged with criminal sex assault, sexual exploitation of a child, or incest, the court may order you to take an HIV test. The results must be revealed to the victim, the victim’s parents if the victim is a minor, and the health care professional who provides care to the victim. (See Wis. Stat. § 968.38 (2007))
A court also can order you to submit to an HIV test if you have significantly exposed a health care worker, paramedic, firefighter, peace officer, correctional officer, state patrol officer, jailer, school employee, or another person to HIV – through contact between blood, semen, breast milk, vaginal fluids, and an open wound or eye. (See Wis. Stat. § 252.15(2)(a)(7) (2007) and Wis. Stat. § 968.38 (2007))
Finally, a Wisconsin court may force you to be tested for HIV in cases when knowledge of your HIV status is in the interest of justice. This is called a court power in equity.
What are HIV confidentiality rights of children?
A health care provider or testing clinic will reveal the HIV test results of children under age 14 to the parent or guardian who consented for testing. If the child consented to testing, the parent or guardian may access the child’s HIV test results only with the child’s consent or a court order. However, a health care provider does have the right to inform foster parents, foster homes, and group homes without the consent of the child. (See Wis. Stat. § 252.15(5)(a)(19) (2007))
If my child is HIV positive, does the school or day care center have the right to know?
No. Wisconsin state law limits the disclosure of HIV status to specific groups of people under very specific circumstances. A school or day care center does not have the right to know the HIV status of its enrolled children or any child seeking enrollment (see Wis. Stat. § 252.15 (2007)). In fact, if a school or day care center is aware of a child’s HIV status, it is prohibited by law from treating that child differently or discriminating against the child (see 42 U.S.C.A. § 12112 (1990)). The exception to the reporting of HIV testing to staff occurs only when the school or center staff is significantly exposed to contact that may result in the transmission of HIV as described above (see Wis. Stat. § 252.15(2)(7) (2007)).
Parents may choose to inform school staff, like a school nurse or a teacher, of their child’s HIV status. If you decide to disclose your child’s HIV status to certain school staff, you should make it clear to those staff that they may not legally disclose your child’s HIV status to other school staff, students, or parents without your written consent.
If any child is injured, the day care center or teacher is required to follow universal precautions when treating the child to protect against disease or infection, regardless of whether it is known that the child is HIV-positive.
Is there any instance when my job requires that I reveal my HIV status?
There are very few instances when your employer has the right to ask about the “nature” of your condition. Under the Americans with Disabilities Act (ADA), if you require a reasonable accommodation to continue working due to a disability (HIV status qualifies), an employer has the right to ask to determine if your request is valid. If you request any leave under the Family and Medical Leave Act (FMLA) your employer may also require information from your doctor concerning your need for leave. If your employer does learn of your HIV status, the information must remain confidential and may not be used to discriminate against you (see 42 U.S.C.A. § 12112(b) (1990)). Please refer to the Employment chapter for more information regarding employment.
Additionally, the Department of Health and Family Services has not yet identified any occupation in which a person’s HIV status would pose a significant risk of transmission, thereby barring any employer from asking you to take a test (see Wis. Stat. § 103.15 (2007)).
Can an insurance company tell my employer that I am HIV positive?
Not legally. Under Wisconsin law, the insurance company must keep the results of your HIV test confidential; your employer has no right to know (see Wis. Stat. § 610.70 (2007)). But the insurance company can tell your employer the names of any employees who are making the employer’s insurance costs increase.
What other protections exist?
Protected Health Information (PHA) is individually identifiable health information about health status, treatment, or payment for health care that can be linked to an individual. Under a broadly sweeping federal law (HIPAA), PHA is deemed confidential. This means that any information contained in your medical records is confidential. If your medical records list your sexual orientation or any other personally identifiable information, it is confidential and protected by law.
Last updated: January 2009
Information contained in this publication should not constitute legal advice. Provided by the AIDS Network for the State Bar of Wisconsin. Also available as HIV and Your Rights, a publication of the AIDS Network |
