HIV Cure Research: Risks Patients Expressed Willingness to Accept

TY - JOUR

T1 - HIV Cure Research

T2 - Risks Patients Expressed Willingness to Accept

AU - Kratka, Allison

AU - Ubel, Peter A.

AU - Scherr, Karen

AU - Murray, Benjamin

AU - Eyal, Nir

AU - Kirby, Christine

AU - Katz, Madelaine N.

AU - Holtzman, Lisa

AU - Pollak, Kathryn

AU - Freedburg, Kenneth

AU - Blumenthal-Barby, Jennifer

N1 - Publisher Copyright: © 2019 by The Hastings Center. All rights reserved

PY - 2019/11/1

Y1 - 2019/11/1

N2 - Despite doing well on antiretroviral therapy, many people living with HIV have expressed a willingness to accept substantial risks for an HIV cure. To date, few studies have assessed the specific quantitative maximal risk that future participants might take; probed whether, according to future participants, the risk can be offset by the benefits; and examined whether taking substantial risk is a reasonable decision. In this qualitative study, we interviewed 22 people living with HIV and used standard gamble methodology to assess the maximum chance of death a person would risk for an HIV cure. We probed participants’ reasoning behind their risk-taking responses. Conventional inductive content analysis was used to categorize key themes regarding decision-making. We found that some people would be willing to risk even death for an HIV cure, and some of their reasons were plausible and went far beyond the health-related utility of an HIV cure. We contend that people's expressed willingness to take substantial risk for an HIV cure should not be dismissed out of hand.

AB - Despite doing well on antiretroviral therapy, many people living with HIV have expressed a willingness to accept substantial risks for an HIV cure. To date, few studies have assessed the specific quantitative maximal risk that future participants might take; probed whether, according to future participants, the risk can be offset by the benefits; and examined whether taking substantial risk is a reasonable decision. In this qualitative study, we interviewed 22 people living with HIV and used standard gamble methodology to assess the maximum chance of death a person would risk for an HIV cure. We probed participants’ reasoning behind their risk-taking responses. Conventional inductive content analysis was used to categorize key themes regarding decision-making. We found that some people would be willing to risk even death for an HIV cure, and some of their reasons were plausible and went far beyond the health-related utility of an HIV cure. We contend that people's expressed willingness to take substantial risk for an HIV cure should not be dismissed out of hand.

KW - HIV

KW - HIV cure trials

KW - human research ethics

KW - research benefits

KW - research risks

UR - https://www.scopus.com/pages/publications/85075146532

UR - https://www.scopus.com/pages/publications/85075146532#tab=citedBy

U2 - 10.1002/eahr.500035

DO - 10.1002/eahr.500035

M3 - Article

C2 - 31743627

SN - 2578-2363

VL - 41

SP - 23

EP - 34

JO - Ethics and Human Research

JF - Ethics and Human Research

IS - 6

ER -