UN agency seeks to ensure patient confidentiality in HIV data collection

Aiming to protect the almost 40 million men, women and children living with HIV from potential stigma and discrimination, the main United Nations agency dealing with AIDS today released new guidelines to ensure that patient confidentiality is not compromised in the process of collecting and storing information on the virus.

The Interim Guidelines on Protecting the Confidentiality and Security of HIV Information were developed through a workshop supported by the Joint UN Programme on HIV/AIDS (UNAIDS) and the United States President’s Emergency Plan for AIDS Relief.

According to the guidelines, using data for public health goals must be balanced against the rights of individuals to privacy and confidentiality. Among the recommendations, they call for countries to adopt privacy and confidentiality laws.

“Ensuring this information is securely stored and confidentially maintained will avoid potential stigmatization and discrimination of individuals and communities, and enhance the quality of the information collected,” said Eddy Beck, UNAIDS Senior Technical Officer.

Together, stigma and discrimination constitute one of the greatest barriers to dealing effectively with the epidemic, according to UNAIDS. They discourage governments from taking timely action against AIDS, and they deter individuals from finding out about their HIV status.

They also inhibit those who know they are infected from sharing their diagnosis and taking action to protect others and from seeking treatment and care for themselves, the agency said.