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.
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