The Right of Children with HIV to Privacy in Kenya
This case concerns a directive issued by President Uhuru Kenyatta ordering the collection of data and the preparation of a report pertaining to school-going children, guardians, and expectant and breastfeeding mothers living with HIV. The High Court of Kenya at Nairobi found this action to be in violation of the rights to privacy and the best interests of the child, recognizing existing standards with respect to the collection and sharing of personal medical information, particularly in relation to HIV status.
On February 23, 2015, President Kenyatta issued a national directive, copied to several national government entities, ordering all County Commissioners to collect data and prepare a report on all school-going children living with HIV and AIDS, as well as guardians and expectant and breastfeeding mothers living with HIV and AIDS.
In June 2015, the Kenya Legal and Ethical Issues Network on HIV and AIDS (KELIN), Children of God Relief Institute (NYUMBANI), and two individuals living with HIV (collectively “Petitioners”) challenged the President’s directive before the High Court of Kenya at Nairobi, Constitutional and Human Rights Division (High Court). They argued that collecting names of persons living with HIV and AIDS (PLHIV) in a manner that links individual names to HIV status violates the best interest of the child, the right to privacy, the right to equality and freedom from discrimination, and the right to dignity enshrined in Articles 27, 28, 29, 31, 43, 47 and 53 of the Constitution of Kenya (Constitution). Specifically, they alleged the implementation of the directive leads to forced or compulsory testing, which in turn, amounts to degrading treatment and punishment for PLHIV. In a separate Amicus Curiae brief, Mr. Anand Grover, former Special Rapporteur on the right of everyone to the enjoyment of the highest attainable standard of physical and mental health, also challenged the directive.
Further, the Petitioners argued that the directive lacked privacy guidelines, in violation of Section 20 the HIV & AIDS Prevention and Control Act (Act). Thus, there was no guarantee that any data collected would be free from disclosure, in violation of Section 22(1) of the Act. To bolster their proposition, they cited Paragraphs 120 and 121 of the International Guidelines on HIV & AIDS and Human Rights 2006 which, taken together, prohibit mandatory HIV testing or registration except in certain cases, obligate States to ensure testing occurs with informed consent, and prohibit disclosure of a person’s HIV status to third parties without consent.
The High Court rejected Petitioners arguments pertaining to Articles 27, 28, 29, 43 and 47. With specific regard to Section 20 of the Act, the High Court noted that the government had in fact instituted guidelines in 2008, prior to the issuance of the President’s directive. Nonetheless, the High Court found the directive unconstitutional on the basis that it constituted a breach of the right to privacy and the best interest of the child provision enshrined in Articles 31 and 53(2) respectively of the Constitution. As a remedy, the High Court ordered, within 45 days of the judgment, that all data collected be codified in a manner that does not link an individual’s name to their HIV status in a public document.
During the 45 day compliance period KELIN made a written request to the Ministry of Health for information regarding the codification process; however, the government did not respond. When the grace period lapsed, KELIN sent a follow-up letter informing the government of its intention to notify the court for failure to comply with the judgment.
The Kenya Legal and Ethical Issues Network on HIV and AIDS (KELIN), Children of God Relief Institute (NYUMBANI), Mr. Anand Grover, former Special Rapporteur on the right of everyone to the enjoyment of the highest attainable standard of physical and mental health (Amicus Curiae)
This case contributes to the existing international legal framework on issues pertaining to the confidentiality of data of PLHIV, as referred to through the judgment and in the international and comparative material submitted in the Amicus Curiae brief. In particular, this case provides an illustrative example of the intersection between the right to privacy and children’s rights. However, although the High Court explicitly confirmed that “an integral part of the right to health is the right to have personal health data treated with confidentiality”, it surprisingly chose to take a narrow approach by not declaring a violation of the right to health despite the facts, on the basis that the directive and its implementation were focused overall on granting that right as opposed to taking it away.
This summary was prepared by ESCR-Net and reprinted with permission.
The implementation of social protection schemes requires collecting many types of information including that identifying beneficiaries and their dependants or carers, earnings, employers, contact details, and more. It is essential that the collection of such information is done without breaching the right to privacy. In this regard, personal information should be kept private and free […]