Routine HIV testing among pregnant women in India: Do the benefits justify the ethical costs?

BACKGROUND: The Government of India has recently instituted routine HIV-testing among pregnant women attending public hospitals. METHODS: A qualitative study was conducted to understand how routine HIV-testing is being implemented. Six focus group discussions were conducted among recently-delivered HIV-negative women and healthcare workers. Twelve HIV+ women who had undergone testing during antenatal care were interviewed. RESULTS: Few participants recalled being informed about the purpose of HIV-testing. Most said their doctor informed them to test if they wished to deliver at a hospital. Only three recalled signing a consent form. Most said they were given papers and told to sign. None could remember hearing they had a right to ‘opt-out' of HIV-testing. Most said husbands/relatives were told their HIV-status before or at the time they learned. Several HIV-positive women said they were told within earshot of other patients. While most HIV+ participants reported receiving post-test counseling, several said hospital workers simply directed them to an ARV Center. Healthcare workers demonstrated sufficient knowledge about HIV testing but many disparaged women attending ANC. Several said ‘uneducated villagers' were unable to comprehend what they were told and there was no purpose in explaining. Many admitted there were occasions when others at the hospital learned a women's HIV-status. CONCLUSIONS: Women are poorly informed about the reasons for HIV-testing. Most do not undergo an informed-consent process or are told they can opt-out of HIV-testing. Counseling following HIV-testing varies widely. Healthcare workers need further training on HIV counseling, confidentiality, informed consent, and the need for non-stigmatizing HIV-testing.