Paper short abstract:

This case study explores privacy questions raised while designing a mobile health intervention for HIV-serodiscordant couples in Thika, Kenya. We show how the intervention unsettles the notion of privacy as boundary negotiation and highlights the ethical implications of knowledge making practices.

Paper long abstract:

In this paper, we offer a case study of the privacy questions raised while designing a mobile health (mHealth) intervention in Thika, Kenya to assist HIV serodiscordant couples, or couples in which one partner is HIV-infected and one is HIV-uninfected, to conceive a child without transmitting HIV. The intervention's core mHealth components include an SMS survey to gather fertility information from the female partner and a clinic-based tablet application to display the fertility data and the HIV-infected partner's viral load during in-clinic counselling sessions. Drawing on feminist technoscience scholarship and data collected through focus groups and interviews with HIV serodiscordant partners, as well as the pertinent details from the intervention, we show how HIV serodiscordant individuals already use many different strategies to protect themselves, their partners, and their families from stigma. We demonstrate that study procedures and tools make partners' bodies and their study participation visible in new ways that have the potential to reshape these boundaries and practices, often producing unintended consequences. Unequal power relations influence the enactment of privacy in ways that unsettle the notion of privacy as boundary negotiation, and raise additional questions about the ethical implications of knowledge making practices associated with medical interventions.