“This is human life, so I don’t know what compensation I can attach to it”: perceptions on compensation in human infection challenge studies in Lusaka, Zambia
Abstract
Human infection challenge (HIC) studies where healthy volunteers are deliberately infected expedite vaccine development. However, agreement on fair compensation that avoids both exploitation and undue inducement remains elusive. Without clear compensation policies or guidelines, implementation of HIC studies remains a challenge in Zambia. We conducted 5 focus group discussions and 15 in-depth interviews on compensation prior to initiation of a typhoid HIC study among healthy adults from higher learning institutions in Lusaka, Zambia. Thematic analysis revealed HIC-specific considerations for compensation, including compensation allocated to research participants and their families for potential risk of immediate and long-term side effects from deliberate infection. Preferences for compensation timing varied, with some advocating for upfront compensation and others favouring compensation after participation to account for lived experiences of side-effects, time commitment and emotional burden. Compensation preferences included monetary and non-monetary compensation in the form of long-term medical coverage and tuition for university/college education. However, views on the value of the compensation varied, highlighting the complexity of determining appropriate compensation that balances voluntariness with fair recognition of risks and sacrifices. Sustained engagement of ethics and regulatory authorities with potential research participants must be encouraged to ensure ethically responsive research and to build public trust in HIC studies.
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Authors: Chanda Mwamba, Evelyn Muleba Kunda‐Ng'andu, Masuzyo Chirwa, Herbert Nyirenda, Stanley Mwale, Seke Muzazu, Michelo Simuyandi, Anjali Sharma
Institutions: Centre for Infectious Disease Research in Zambia