Hepatitis C Data Justice: The Implications of Data-Driven Approaches to the Elimination of Hepatitis C

Author: Emily Lenton Kate Seear Dion Kagan kylie valentine Suzanne Fraser Adrian Farrugia Sean Mulcahy

Theme: Social Science & Policy Research Year: 2022

Globally, rates of hepatitis C treatment uptake have declined. Achieving elimination by 2030 is
inspiring novel methods to find, diagnose and treat the ‘missing millions’ of people with hepatitis C.
Public health approaches that use data-driven approaches including case finding, departmental
notification and contact tracing are increasingly being developed and implemented to reach the
elimination goal.
Drawing from interviews with policymakers, lawyers, peers and others who work with people
affected by hepatitis C (N=30), we explore they perceive the use of data-driven interventions to
achieve elimination. Following Molldrem and Smith (2020), we interpret the interviews via the
notion of hepatitis C ‘data justice’.
While there was some enthusiasm for data-driven interventions, several concerns were raised.
Stakeholders were suspicious of the development of data collection processes and systems, or they
believed that people with hepatitis C were. Some expressed concerns about the sharing of people’s
health data without their informed consent or prior knowledge, and worried that while systems
offer putative protections for patient rights, they depended on a high level of legal health and data
literacy. Concerns that data-driven approaches could perpetuate hepatitis C-related stigma and
discrimination were also raised.
Hepatitis C elimination goals have created a strong mandate for the expansion of data-driven
approaches. Given the marginalisation and stigmatisation of people affected by hepatitis C, the
implementation of these interventions raised numerous ethical concerns among stakeholders.
Following Molldrem and Smith’s (2020) argument for HIV ‘data justice’ we interpret these concerns
as a call for hepatitis C ‘data justice’. This approach helps us account for complexities, risks and
challenges, and critique what is at stake for those affected. In concluding, we argue that data-driven
interventions must foreground social justice concerns and ensure the rights of people living with
hepatitis C are preserved.
Disclosure on interest


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