The complexity of consent: women's experiences testing for HIV at an antenatal clinic in Durban, South Africa

Abstract

Informed consent has historically been a cornerstone to ensuring autonomy during HIV testing. However, recent changes to global guidance on HIV testing have led to substantial debate on what policy provisions are necessary to ensure that consent remains meaningful in the context of testing. Despite disproportionate rates of testing during pregnancy, pregnant women's perspectives on the HIV testing process are underrepresented in the testing discourse. This study explores women's experiences with HIV testing and the consent process in a public antenatal clinic in South Africa. Qualitative interviews with 25 women were conducted at the clinic at either an antenatal visit or an infant immunization visit that followed HIV testing. Interviews were transcribed, translated, and coded for analysis. Women were categorized into one of the three groups based on their perceptions of choice in consenting for an HIV test. Matrices were used to allow for cross-category and cross-case comparison. Half of the women described having a clear choice in their decision to test. Others were less clear about their choice. Some women felt they had no choice in testing for HIV. None of the women stated that they were tested without having signed a consent form. We found that half of the women's narratives illustrated direct and indirect ways in which providers coerced them into taking an HIV test while receiving antenatal care. As the new guidance on HIV testing is implemented in different settings, it is critical to monitor women's testing experiences to ensure that a woman's right to make an informed, voluntary choice is not violated. Furthermore, models of testing that allow us to meet broader public health goals while simultaneously respecting women's autonomy are needed.

Keywords:

• HIV/AIDS
• qualitative research
• human rights
• pregnant women
• informed consent

Acknowledgements

This research was sponsored by the National Institute for Health and Child Development (NICHD), 1-R01-HD050134001-A1. Views expressed are those of the authors, and not necessarily those of the sponsoring agency. We thank the women who participated in this study for their contributions. We also thank study staff for their work and dedication. Finally, we thank Matthew Pierce, Vivian Go, Laurie Abler, and Sarah Wyckoff for their contributions to the manuscript.