People living with HIV infection and AIDS should have the same basic rights and responsibilities as those which apply to all citizens of the country.
1) Liberty, autonomy, security of the person and freedom of movement:
- People with HIV or AIDS have the same rights to liberty and autonomy, security of the person and to freedom of movement as the rest of the population.
- No restrictions should be placed on the free movement of HIV-infected people, and they may not be segregated, isolated or quarantined in prisons, schools, hospitals or elsewhere merely because of their HIV-positive status.
- People with HIV infection or AIDS are entitled to maintain personal autonomy (i.e. the right to make their own decisions) about any matter that affects marriage and child-bearing - although counselling about the consequences of their decisions should be provided.
2) HIV Testing
(a) When may a person be tested for HIV
- No person may be tested for HIV infection without his or her free and informed consent (except in the case of anonymous epidemiological screening programmes undertaken by authorised agencies such as the national, provincial or local health authorities.)
- In all other cases – such as HIV testing for research purposes or when a person’s blood will be screened because he or she is a blood donor – the informed consent of the individual is legally required.
- Where an existing blood sample is available, and an emergency situation necessitates testing the source patient’s blood (e.g. when a health care worker has been put at risk because of an accident such as a needlestick injury), HIV testing may be undertaken without informed consent - but only after informing the source patient that the test will be performed and after assuring him or her that privacy and absolute confidentiality will be maintained.
- If an existing blood sample is not available for testing in an emergency situation, the patient must give his or her informed consent for blood to be drawn for the HIV test to be done.
- Routine testing of a person for HIV infection for the perceived purpose of protecting a health care professional from infection is impermissible - regardless of consent.
- Proxy consent for an HIV test may be given where an individual is unable to give consent. Proxy consent is consent by a person legally entitled to grant consent on the behalf of another individual. For example, a parent or guardian of a child below the age of consent to medical treatment may give proxy consent to HIV testing of the child.
(b) Informed consent, pre- and post-HIV test counselling
- Informed consent, which includes pre-HIV test counselling, is compulsory before HIV testing may be carried out.
- Informed consent means that the person has been made aware of, and understands, the implications of the test.
- The person should be free to make his or her own decision about whether to be tested or not, and may in no way be coerced or forced into being tested.
- Pre-test counselling should occur before an HIV test is undertaken. It should take the form of a confidential dialogue between the client and a suitable, qualified person where relevant information is given and consent obtained.
- Post-test HIV counselling should take place as part of the process of informing an individual of an HIV test result.
- Anonymous and confidential HIV antibody testing with pre- and post-HIV test counselling should be available to all. Persons who test HIV positive should have access to continuing support and health services.
c) Frequently Asked Questions
Must a person sign a written consent form before an HIV test?
According to the law, a person can also consent verbally to an HIV test. It is however advisable to obtain written proof that the person has been pre-test counselled and that they agree to have an HIV test.
Can a hospital test a patient for HIV without his /her consent?
NO. If a person goes to a hospital for treatment, he/she must still consent to all treatment and testing procedures (including HIV testing). By going to a hospital, people do not give up their rights to privacy and security. They also retain their right to control their own bodies. HIV testing in hospitals may not be done without proper pre-test counselling and consent from the patient.
If a hospital has wall posters or pamphlets saying that they do HIV testing on all patients, does this mean that all patients automatically give their consent to be tested?
Wall posters and pamphlets saying a hospital is doing HIV testing on all patients is not consent because:
- not all patients are literate
- not everyone will see the poster or pamphlet
- reading the poster or pamphlet does not mean that the patient has understood what an HIV test entails and what the results may imply for the patient
May a person refuses pre-HIV test counselling (and HIV testing)?
Yes, it is the right of a person to refuse HIV counselling and testing, and the counsellor should accept, after personal consultation, a person’s decision to refuse these services. The counsellor should, however, try to find out why a person refuses to receive (for instance) pre-HIV test counselling and attempt if possible to rectify the patient’s preconceptions. (Some people refuse counselling because of previous traumatic or negative experiences with inadequate or unsympathetic counsellors.) Most clients, however, find pre- and post- HIV test counselling a helpful experience.
Are there any exceptions to the rule of informed consent?
The only exceptions to the rule that a person must give their consent to any treatment, tests or an operation, are when genuine emergencies are involved or when certified mentally ill patients have to be treated. If a patient needs emergency treatment but is unaware of the treatment (as will be the case in unconsciousness), the doctor or hospital does not need consent before carrying out essential treatment that will save the patient's life. It is however doubtful if an HIV test can ever be necessary before emergency treatment.
Consent to treatment or testing of a mentally ill patient should be gained from the person's curator, spouse, parent, child (if the child is 21 or older) or sibling. If the patient is in a mental institution, and none of the above-mentioned people can be found, the medical superintendent can consent on behalf of the patient in serious cases. The patient can however only be tested for HIV if this information is vital for his/her medical treatment. In any other cases, such consent could be construed as discriminatory.
3. Confidentiality and privacy
- People with HIV infection and AIDS have the right to confidentiality and privacy about their health and HIV status.
- Health care professionals are ethically and legally required to keep all information about clients or patients confidential.
- Information about a person’s HIV status may not be disclosed to anybody without that person’s fully informed consent.
- After death, the HIV status of the deceased person may not be disclosed to anybody without the consent of his or her family or partner – except when required by law.
(a) Frequently Asked Questions:
May doctors keep the diagnosis of their patients secret from the nursing staff?
A health care professional may only disclose a patient's HIV status to other health care professionals with the patient's consent. If the health care professional explains to the patient why it is important for other health care professionals to know the patient’s HIV status, most patients will consent to this information being given out. Nurses may, for instance, need to know a patient's HIV status in order to render specialised treatment.
If a patient nevertheless refuses to consent to such information being given out to other health care professionals, the doctor must respect this decision. In such a case the patient should be warned that to keep the diagnosis secret from other health care professionals might very well result in the patient getting unsuitable treatment - and that it may even put the patient’s life in danger.
If an HIV-positive client refuses to tell his or her partner about the infection and refuses to protect the sexual partner, may the health care professional disclose the client’s HIV-positive status to the partner?
A client’s right to confidentiality and privacy should be respected at all times. Under NO circumstances may a client’s HIV status be communicated to anyone without prior permission (preferably in writing) from the client. The health care professional or counsellor may therefore not disclose the HIV-positive status of a client to his or her sexual partner/s.
The counsellor should rather try to convince the client to disclose his or her status to the sexual partner and to use condoms. It is not the counsellor’s responsibility to tell, it is the client’s responsibility. If a counsellor decides to tell, he or she must also be prepared to accept full responsibility for the decision, as well as the possible legal consequences.
4. Health and support services, public benefits, medical schemes and insurance
- Because people with HIV or AIDS in South Africa have the right to equal access to public benefits and opportunities, HIV testing should not be required as a precondition for eligibility to such advantages.
- People with HIV/AIDS have the same rights to housing, food, social security, medical assistance and welfare as all other members of our society.
- Public measures should be adopted to protect people with HIV or AIDS from discrimination in employment, housing, education, child care and custody and the provision of medical, social and welfare services.
- Medical schemes may not discriminate unfairly- directly or indirectly – against any person on the basis of his or her state of health.
- People with HIV infection or AIDS (and those suspected of being at risk of having HIV or AIDS), should be protected from arbitrary discrimination in insurance. Insurance companies may not unfairly refuse to provide an insurance policy to any person solely on the basis of HIV/AIDS status.
5.Education on HIV and AIDS
- All people have the right to proper education and full information about HIV and AIDS, as well as the right to full access to and information about prevention methods.
- Public education with the specific objective of eliminating discrimination against persons with HIV or AIDS should also be provided.
6.The responsibilities of the media
- Persons with HIV infection or AIDS have the right to fair treatment by the media and to observance of their rights to privacy and confidentiality.
- The public has the right to informed and balanced coverage of, and the presentation of, information and education on HIV and AIDS.
7.The right to safer sex
- All persons have the right to insist that they or their sexual partners take appropriate precautionary measures to prevent the transmission of HIV.
- The especially vulnerable position of women in this regard should be recognised and addressed - as should the especially vulnerable position of youth and children.
- People have a moral and legal obligation to tell their sex partners if they are HIV positive. They must also ensure that their sex practices are as safe as possible (e.g. by using condoms). Disclosing HIV infection to sex partners is a part of one’s duty to protect others from potential exposure to the virus.
8.The rights of prisoners
- Prisoners with HIV infection or AIDS should enjoy the same standards of care and treatment as other prisoners.
- Prisoners with HIV/AIDS should have access to the kind of special care that is equivalent to that enjoyed by other prisoners with other serious illnesses.
- Prisoners should have the same access to education, information and preventive measures (condoms) as the general population.
9. Duties of persons with HIV or AIDS
- Persons with HIV or AIDS have the duty to respect the rights, health and physical integrity of others, and to take appropriate steps to ensure this when necessary.