Region: Africa
Year: 2016
Court: High Court of Kenya at Nairobi, Constitutional and Human Rights Division
Health Topics: Child and adolescent health, Health care and health services, Health information, HIV/AIDS, Infectious diseases
Human Rights: Freedom from discrimination, Right to privacy
Tags: AIDS, Awareness, Children, Confidentiality, Disclosure, Electronic health information, Electronic health records, Health data, Health records, HIV, HIV positive, HIV status, Medical records, Minor, Most-at-risk, Non-disclosure, People living with HIV/AIDS, PLHIV, Transmission
President Kenyatta issued a directive to national government entities to prepare a report collecting data on all school-going children who were living with HIV and AIDS. Further the directive also mandated data on the guardians of such children, expectant mothers living with HIV and breastfeeding mothers who are HIV positive. The data was to be submitted by 15th of March 2016. The petitioners in this case challenged the aforesaid directive arguing that collecting such data violates the right to privacy and dignity, right to equality and freedom from discrimination and is against the best interest principle as enshrined in the Constitution of Kenya. Mr. Anand Grover, former UN Special Rapporteur on the Right to Health filed an amicus brief stating that disclosure of HIV related information without written consent of the person is prohibited and is in violation of the rights guaranteed by the Constitution of Kenya.
The Petitioners further argued that storage of information related to people living with HIV could only be done in strict adherence to Section 20 of the HIV & AIDS Prevention and Control Act which requires privacy guidelines to be prescribed by the Ministry of Health. The lack of such privacy guidelines accompanying the directive could lead to disclosure of highly sensitive information in violation of Section 22(1) of the Act.
The High Court held that the directive was unconstitutional as it violated the right to privacy and the best interest of child principle. The Court stated that linking a child’s identity to its HIV status is not in line with the best interest principle. The Court stated that the right to privacy protects against revelation of private information related to an individual or family. The Court stated that the directive would have inevitably led to forced/compulsory testing, which is a direct violation of the right to privacy. The High Court ordered, that all data collected be stored in manner that does not link a person’s identity to their HIV status.
“The directive it would therefore seem, anticipated that the data would be provided from all schools at the County and Sub-County level. The obvious fact to note in that regard is that schools are not custodians of health information and I do not know how schools were to provide the information of this nature, given that such information is only available at health facilities. The Respondents did not also provide insights on how that information was to be collected from the schools and all they said was that there was not going to be forcible extraction of the information. In the event all I can surmise, reasonably so, is that to the extent that there is no evidence that any consent was obtained prior to the collection of data, I am satisfied that the directive would have amounted to compulsory testing which would be a violation of the right to privacy.” (Para 78)
“Applying this principle to the instant case, the Petitioners have applauded the efforts of the Respondents in developing policies geared towards elimination of HIV/AIDS. They are also happy with the intent of the directive that is meant to ensure better health services and support to school going children with HIV. However, I must agree with them that the manner in which the directive is being implemented defeats the best interest of the child. I say so because the linking of a child’s name with his/her HIV status in the data matrix, in my view, does not protect the best interest of the child and despite the good intentions of the Respondents, it is not in line with the best interests of the child to have the child’s status disclosed without protecting the identity of the child. Breach of the right to privacy is in essence a violation of this principle.” (Para 105)