Confidentiality and Consent in Health Research With Youth Living in Zimbabwe: Ethical Challenges for the Responsible Conduct of Health Research Using Social Media in Africa

Abstract

BACKGROUND: The explosive growth of mobile telephone ownership and social media use in Africa introduces new modes of communication, education, information sharing, and opportunities for research and data generation. COVID-19 physical distancing, quarantine and lockdowns have impacted the way that people socialize, leading many to use social media platforms to stay connected. The beneficial impact of social media services on access to health information and improving health behaviors and outcomes is well-known. Less well understood are the challenges of using social media platforms to generate data for health research in Africa, and appropriate ethical guidelines for the responsible conduct of social media health research in Africa. The visuality of social media renders all-but-impossible many of the central principles of traditional research ethics (confidentiality and anonymity). The networked nature of social media calls for a new definition of informed consent. OBJECTIVES: We seek to define the distinct ethics of the responsible conduct of health-related social media research in Africa. METHODS: In-depth qualitative interviews, surveys, and focus group discussions, with Zimbabwean Research Ethics Professionals and youth Zimbabwe. FINDINGS: We describe adolescent-users’ perceptions of risk and expectations of privacy when sharing personal health data on social media and during research. We assess the robustness of current IRB ethics guidelines for health-related social media research in Zimbabwe. NEXT STEPS: A scoping review will identify and classify the current range of social media-based health interventions and make recommendations for appropriate frameworks to increase the ethical conduct of health-related social media research in Africa.