Having to tell: Mandatory disclosure of known HIV-positive status in healthcare settings in the WHO European region

January 28, 2019

Today, at the HepHIV2019 conference in Bucharest, we published our findings on mandatory disclosure of known HIV-positive status in healthcare settings in the WHO European region.

Mandatory disclosure of known HIV-positive status in healthcare settings is defined as HIV disclosure in medical settings (other than when accessing HIV care or treatment), where disclosure is required by law or formal regulation, and the service cannot be obtained without the disclosure being made.

Although in some instances, disclosure of HIV status might be recommended to get the best care, a legal obligation to do so should not take precedent over a patient’s right to privacy.

UNAIDS/WHO recommend voluntary disclosure to respect the dignity and autonomy of people living with HIV. Mandatory disclosure negates the concept of informed consent and violates the right to confidentiality, potentially placing people with HIV at increased risk of stigma and discrimination. 

Fear of being treated differently by healthcare professionals, and having one’s HIV status disclosed to others, acts as a barrier to accessing healthcare, thus being detrimental to HIV prevention and treatment efforts. 

The research, conducted  by the HIV Justice Network on behalf of HIV JUSTICE WORLDWIDE, aimed to discover in which of the 53 countries of the WHO European region* was it mandatory for HIV disclosure by a patient to a physician, a nurse, a dentist and/or to an employee of a healthcare provider (other than those listed above) and if so, what was the legal or regulatory basis for this might be.

A confidential online survey was distributed in four languages (English, French, Spanish and Russian) via existing HIV networks, email lists and social media across the WHO European region from early December 2017 to the end of January 2018. The survey was targeted at organisations familiar with the legal context in their country.  

 “Mandatory disclosure in healthcare settings” was defined as HIV disclosure in medical settings (other than when accessing HIV care or treatment), where disclosure was required by law or formal regulation and the service could not be obtained without it. 

37 organisations representing 29 countries across the WHO European region responded to the survey.  

Eight countries reported HIV disclosure in healthcare settings as a legal requirement. Mandatory disclosure was reported mainly by Eastern European and Central Asian countries (7/8 EECA respondent countries). Sweden was the only participating Western European country (1/14) where HIV disclosure is mandatory under its Communicable Disease Act. 

HIV-related disclosure policies differ widely across Europe. There is a need to remove all mandatory disclosure requirements and instead create consistent, rights-based policies about HIV-related disclosure in healthcare settings. This requires building consensus around the reasons why and when HIV status disclosure in healthcare settings may be appropriate and/or desirable. Advocacy efforts at regional level, adapted to the national context, should be supported and developed to argue for legislative change in line with best practice. 

To see the full results, download the presentation as a pdf here.