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HIV Cure Research: Risks Patients Expressed Willingness to Accept
Allison Kratka1, Peter A Ubel2, Karen Scherr3
1Internal medicine resident at Brigham and Women's Hospital.
Ethics & Human Research
|November 20, 2019
Summary
Many people living with HIV would risk death for a cure, even when on effective therapy. Their reasons for accepting significant risks are complex and warrant serious consideration in cure research.
Area of Science:
- Medical research
- Public health
- Qualitative research
Background:
- Antiretroviral therapy (ART) is effective for managing HIV but does not provide a cure.
- Many individuals living with HIV express a strong desire for an HIV cure, even accepting significant risks.
- Limited research quantifies acceptable risk levels or explores the rationale behind willingness to take risks for an HIV cure.
Purpose of the Study:
- To assess the maximum acceptable risk of death for an HIV cure among people living with HIV.
- To explore participants' reasoning and decision-making processes regarding substantial risk-taking for a cure.
- To determine if the perceived benefits of an HIV cure can outweigh substantial risks.
Main Methods:
- Qualitative study involving interviews with 22 people living with HIV.
- Standard gamble methodology used to quantify the maximum acceptable risk of death.
- Conventional inductive content analysis employed to identify key themes in decision-making.
Main Results:
- Some participants indicated a willingness to risk even death for an HIV cure.
- Participant reasoning extended beyond purely health-related benefits, encompassing broader life considerations.
- Decision-making processes revealed complex factors influencing risk tolerance for an HIV cure.
Conclusions:
- The expressed willingness to accept substantial risks for an HIV cure should not be disregarded.
- Understanding participant perspectives on risk is crucial for ethical and effective HIV cure trial design.
- Future HIV cure research must consider the multifaceted motivations and risk-benefit analyses of potential participants.
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