Literature DB >> 31743627

HIV Cure Research: Risks Patients Expressed Willingness to Accept.

Allison Kratka1, Peter A Ubel2, Karen Scherr3, Benjamin Murray4, Nir Eyal5, Christine Kirby6, Madelaine N Katz7, Lisa Holtzman8, Kathryn Pollak9, Kenneth Freedburg10, Jennifer Blumenthal-Barby11.   

Abstract

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.
© 2019 by The Hastings Center. All rights reserved.

Entities:  

Keywords:  HIV; HIV cure trials; human research ethics; research benefits; research risks

Mesh:

Year:  2019        PMID: 31743627      PMCID: PMC7391483          DOI: 10.1002/eahr.500035

Source DB:  PubMed          Journal:  Ethics Hum Res        ISSN: 2578-2355


  29 in total

1.  Three approaches to qualitative content analysis.

Authors:  Hsiu-Fang Hsieh; Sarah E Shannon
Journal:  Qual Health Res       Date:  2005-11

2.  The qualitative content analysis process.

Authors:  Satu Elo; Helvi Kyngäs
Journal:  J Adv Nurs       Date:  2008-04       Impact factor: 3.187

3.  Challenges in clinical trial design for HIV-1 cure research.

Authors:  Nir Eyal; Daniel R Kuritzkes
Journal:  Lancet       Date:  2013-11-02       Impact factor: 79.321

4.  "We Need to Deploy Them Very Thoughtfully and Carefully": Perceptions of Analytical Treatment Interruptions in HIV Cure Research in the United States-A Qualitative Inquiry.

Authors:  Karine Dubé; David Evans; Lynda Dee; Laurie Sylla; Jeff Taylor; Asheley Skinner; Bryan J Weiner; Sandra B Greene; Stuart Rennie; Joseph D Tucker
Journal:  AIDS Res Hum Retroviruses       Date:  2017-07-10       Impact factor: 2.205

Review 5.  Life expectancy living with HIV: recent estimates and future implications.

Authors:  Fumiyo Nakagawa; Margaret May; Andrew Phillips
Journal:  Curr Opin Infect Dis       Date:  2013-02       Impact factor: 4.915

6.  Assessing values for health: numeracy matters.

Authors:  S Woloshin; L M Schwartz; M Moncur; S Gabriel; A N Tosteson
Journal:  Med Decis Making       Date:  2001 Sep-Oct       Impact factor: 2.583

7.  Perceptions of Equipoise, Risk-Benefit Ratios, and "Otherwise Healthy Volunteers" in the Context of Early-Phase HIV Cure Research in the United States: A Qualitative Inquiry.

Authors:  Karine Dubé; Lynda Dee; David Evans; Laurie Sylla; Jeff Taylor; Brandon Brown; Veronica Miller; Amy Corneli; Asheley Skinner; Sandra B Greene; Joseph D Tucker; Stuart Rennie
Journal:  J Empir Res Hum Res Ethics       Date:  2017-10-06       Impact factor: 1.742

8.  A global survey of HIV-positive people's attitudes towards cure research.

Authors:  R Simmons; M Kall; S Collins; G Cairns; S Taylor; M Nelson; S Fidler; K Porter; J Fox
Journal:  HIV Med       Date:  2016-05-11       Impact factor: 3.180

9.  Recruitment and ethical considerations in HIV cure trials requiring treatment interruption.

Authors:  Michael P Arnold; David Evans; Nelson Vergel
Journal:  J Virus Erad       Date:  2015-01-01

10.  An activist's argument that participant values should guide risk-benefit ratio calculations in HIV cure research.

Authors:  David Evans
Journal:  J Med Ethics       Date:  2017-01-06       Impact factor: 2.903

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  5 in total

1.  Framing a Consent Form to Improve Consent Understanding and Determine How This Affects Willingness to Participate in HIV Cure Research: An Experimental Survey Study.

Authors:  John A Sauceda; Karine Dubé; Brandon Brown; Ashley E Pérez; Catherine E Rivas; David Evans; Celia B Fisher
Journal:  J Empir Res Hum Res Ethics       Date:  2020-12-14       Impact factor: 1.978

2.  Willingness to risk death endpoint in HIV cure-related research with otherwise healthy volunteers is misleading.

Authors:  Karine Dubé; Lynda Dee
Journal:  J Virus Erad       Date:  2020-04-30

3.  Unwillingness of patients in Ghana to interrupt antiretroviral therapy for HIV cure research.

Authors:  Evelyn Y Bonney; Helena Lamptey; James O Aboagye; Christopher Zaab-Yen Abana; Anthony T Boateng; Darius N K Quansah; Adjoa Obo-Akwa; Vincent J Ganu; Peter Puplampu; George B Kyei
Journal:  J Virus Erad       Date:  2021-01-01

4.  HIV cure research in the time of COVID-19 - Antiretroviral therapy treatment interruption trials: A discussion paper.

Authors:  S Fidler; S Lewin; S Deeks; O S Sogaard; L Vanderkerckhove; S Collins; D Kelly; J Singh; M Caskey; J Frater
Journal:  J Virus Erad       Date:  2020-12-06

5.  Time to Engage Young People in HIV Cure Research.

Authors:  Parya Saberi; Chadwick K Campbell; Manuel Venegas; Karine Dubé
Journal:  AIDS Res Hum Retroviruses       Date:  2021-04-01       Impact factor: 2.205

  5 in total

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