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Right to Privacy

Every person in South Africa has a right to privacy. People living with HIV/AIDS often invoke this right when dealing with issues around disclosing their HIV-positive status. HIV/AIDS is not a notifiable disease, and therefore, except in rare instances, HIV-positive people cannot be forced to disclose their HIV status to anyone.

John Hodgkiss/Perinatal HIV Research Unit (PHRU)

The only people who know the HIV status of a person after an HIV test are:

  • the health care worker who gives the results of the test and
  • the individual who took the test

The South African Medical Association (SAMA) recommends that health care workers do not disclose the HIV status of an individual to third parties (including family, sexual partners and employers) unless the patient has provided informed consent (i.e. know the consequences of their status being disclosed). UN, WHO and SAMA guidelines do provide for "disclosure without consent" when a patient refuses to tell their partner that they are HIV-infected and there is a real risk of infection to an identifiable sexual partner.

SAMA recommends:

"Doctors may divulge information on the serostatus of a patient to third parties without the patient's consent only when all of the following circumstances exist:

  1. An identifiable third party is at risk
  2. The patient, after appropriate counselling, does not personally inform the third party
  3. The doctor has informed the patient that he/she intends breaking confidentiality under the circumstances" (source)

A person who tests HIV-positive cannot be forced to disclose their HIV status in most situations. Some areas are covered below. There is no law at present in South Africa forcing people to disclose their HIV status to their partner.

Battling the brutal stigma of HIV

Apr 25, 2005 – The current lawsuit in the Johannesburg High Court by three HIV-positive women against Independent Democrats leader Patricia de Lille and journalist Charlene Smith is uncovering more than just issues of privacy. It is also highlighting South Africa's urgent need to normalise HIV in order to prevent a social backlash after a person discloses a positive status.

The three women are suing De Lille and Smith, as well as publisher New Africa Books, over the publication of their identities and HIV status in De Lille's biography, Patricia de Lille. They are claiming R200 000 each from both De Lille and Smith, and want their names to be removed from the book. The women allegedly approached De Lille with complaints about an HIV/AIDS drugs trial in which they participated between 1999 and 2001.

Mark Heywood, of the AIDS Law Project, which is representing the three women, says the trial is indicative of how far South Africa still must go to end the stigmatisation and subsequent maltreatment of HIV-positive people, especially poor women, such as the plaintiffs.

"If you're a black woman living in a shack, in an informal settlement, your life [most likely] depends financially on abusive men. Your ability to disclose is fundamentally different than if you are a white judge," Heywood says, referring to Judge Edwin Cameron's disclosure of his HIV-positive status years ago. ... Read more.

A person who infects their sexual partner with HIV while knowing his/her HIV status could be charged with murder, attempted murder or assault under South African law. However, no person has ever been criminally convicted of intentionally passing on HIV in South Africa.

The Draft Sexual Offences Bill makes the intentional non-disclosure of HIV/AIDS by a person to their sexual partner a criminal offence. This section of the Bill is under scrutiny. Some critics say that if this section of the Bill is enacted, it will encourage people not to get HIV-tested as any potential prosecutor would not be able to prove prior knowledge of the perpetrator's HIV-status.

2.2 Disclosure to Families

People have a constitutional right to privacy and do not have to disclose their status to their families. Because HIV/AIDS is not a notifiable disease, there is no law requiring a health care worker to notify an HIV-positive person's family.

2.3 Disclosure to Employers

Employers cannot legally request a person's HIV status, or require that a person take an HIV test:

  • when applying for a job (unless the job is with the South African National Defence Force, the National Intelligence Agency or the Secret Service)
  • while in their employment, unless the employer has permission from the Labour Court, or
  • when s/he takes sick leave, although a health care worker can state an illness on the health certificate (but not HIV status).

A person cannot be fired arbitrarily because they have HIV/AIDS, according to the Employment Equity Act.

2.4 Disclosure to Medical Aids

People do not have to take an HIV test to receive medical aid and you will do not have to pay a higher premium if they are HIV-positive, according to the Aids Law Project (HIV/AIDS Current Law and Policy: Privacy and Confidentiality).

2.5 Disclosure to Insurance Companies

  • Insurance companies usually ask for an HIV test. A person's HIV status is a "material fact" that can affect the insurance company's assessment of someone's risk
  • If a person refuses to do the test, which is his or her right, an insurance company might not offer that person cover
  • HIV-positive people usually have to pay higher premiums for their life insurance, or are subjected to an exclusion clause that limits the amount payable after an AIDS-related death. (Read more from the Aids Law Project)
  • Insurance companies have a duty to keep people's HIV-status confidential

2.6 Disclosure to Health Workers

Patients are not required to tell health care workers that they are HIV-positive even when under their care. Health workers following universal precautions have very little chance of being infected by HIV.

2.7 Disclosure to Sexual Assault Victims

A victim of rape or sexual assault will be able to request that the sexual offender be tested for HIV, according to the Compulsory HIV testing of Alleged Sexual Offenders Bill. Only the victim and the offender have access to the results. The victim is not allowed to disclose the offender's HIV status and the HIV test is not admissible as evidence in criminal or civil proceedings.

2.8 Legal Recourse

If someone's HIV-status is revealed without their consent, that person can:

  • sue a person (including a health care worker) for civil damages
  • lay a complaint against a health care worker with the appropriate professional body, such as the Health Professions Council of South Africa (HPCSA) or the South African Nursing Council (SANC)
  • take their employer to the Commission for Conciliation, Mediation and Arbitration (CCMA) if they have been fired unfairly (e.g. on the basis of their HIV status)
For further information read: HIV/AIDS Current Law and Policy: Privacy and Confidentiality
Wits Journalism Anova Health

The project is jointly managed by the Anova Health Institute and the Journalism and Media Studies Programme at the University of the Witwatersrand. The project is funded by by the Health Communication Partnership based at the Johns Hopkins Bloomberg School of Public Health Centre for Communication Programmes and the President’s Emergency Plan for AIDS relief through the United States Agency for International Development under terms of Award No. JH/HESA-02-05 and through the Anova Health Institute through PEPFAR via USAID under Award No. AID-674-A-12-00015.