Geolocation, ethics, and HIV research

Abstract

The HIV epidemic continues to disproportionally affect marginalized populations. Digital tools, including global positioning system and ecologic momentary assessment, have been studied as methods for improving data collection and interventions among HIV-affected communities. Although people living with HIV and populations at high risk have found it acceptable to use digital technologies for HIV research, concerns over privacy and trust have also been expressed. This paper explores and describes the use of geolocation technology data (e.g., location-based social media) in HIV research as well as the ethical and implementation considerations that warrant examination prior to use. Transparent and clear language in consent forms might improve participant trust in the project and investigators’ ability to keep participant data secure and private. With respect to institutional review boards, a committee member who is knowledgeable about digital technologies and consumer protections may offer guidance in assessing adequate protections in study protocols. As technology used in research continues to evolve, investigators and the research community must continue to examine the ethical challenges that emerge to address participant concerns.