Altruism: Scoping review of the literature and future directions for HIV cure-related research

Karine Dubé; Kelly E Perry; Kushagra Mathur; Megan Lo; Sogol S Javadi; Hursch Patel; Susanna Concha-Garcia; Jeff Taylor; Andy Kaytes; Lynda Dee; Danielle Campbell; John Kanazawa; David Smith; Sara Gianella; Judith D Auerbach; Parya Saberi; John A Sauceda

doi:10.1016/j.jve.2020.100008

Altruism: Scoping review of the literature and future directions for HIV cure-related research

J Virus Erad. 2020 Aug 25;6(4):100008. doi: 10.1016/j.jve.2020.100008. eCollection 2020 Nov.

Authors

Karine Dubé¹, Kelly E Perry¹, Kushagra Mathur², Megan Lo², Sogol S Javadi², Hursch Patel¹, Susanna Concha-Garcia^{3

4}, Jeff Taylor^{5

6

7}, Andy Kaytes⁵, Lynda Dee^{6

8

9}, Danielle Campbell^{9

10}, John Kanazawa¹, David Smith^{3

11}, Sara Gianella^{3

11}, Judith D Auerbach¹², Parya Saberi¹³, John A Sauceda¹³

Affiliations

¹ University of North Carolina at Chapel Hill, Gillings School of Global Public Health, Chapel Hill, NC, USA.
² University of California San Diego (UCSD) School of Medicine, San Diego, CA, USA.
³ AntiViral Research Center (AVRC), USA, San Diego, CA, USA.
⁴ HIV Neurobehavioral Research Program, UCSD, San Diego, CA, USA.
⁵ AVRC Community Advisory Board (CAB), San Diego, CA, USA.
⁶ amfAR Institute for HIV Cure Research CAB, San Francisco, CA, USA.
⁷ HIV + Aging Research Project - Palm Springs (HARP - PS), Palm Springs, CA, USA.
⁸ AIDS Action Baltimore, Baltimore, MD, CA, USA.
⁹ Delaney AIDS Research Enterprise (DARE), CAB, San Francisco, CA, USA.
¹⁰ Charles R. Drew University of Medicine and Science, Los Angeles, CA, USA.
¹¹ Division of Infectious Diseases and Global Public Health, UCSD, San Diego, CA, USA.
¹² School of Medicine, University of California, San Francisco (UCSF), San Francisco, CA, USA.
¹³ Center for AIDS Prevention Studies (CAPS), Division of Prevention Sciences, UCSF, San Francisco, CA, USA.

Abstract

Introduction: The question of what motivates people to participate in research is particularly salient in the HIV field. While participation in HIV research was driven by survival in the 1980's and early 1990's, access to novel therapies became the primary motivator with the advent of combination antiretroviral therapy (cART) in the late 1990s. In the HIV cure-related research context, the concept of altruism has remained insufficiently studied.

Methods: We conducted a scoping review to better contextualize and understand how altruism is or could be operationalized in HIV cure-related research. We drew from the fields of altruism in general, clinical research, cancer, and HIV clinical research-including the HIV prevention, treatment, and cure-related research fields.

Discussion: Altruism as a key motivating factor for participation in clinical research has often been intertwined with the desire for personal benefit. The cancer field informs us that reasons for participation usually are multi-faceted and complex. The HIV prevention field offers ways to organize altruism-either by the types of benefits achieved (e.g., societal versus personal), or the origin of the values that motivate research participation. The HIV treatment literature reveals the critical role of clinical interactions in fostering altruism. There remains a dearth of in-depth knowledge regarding reasons surrounding research participation and the types of altruism displayed in HIV cure-related clinical research.

Conclusion: Lessons learned from various research fields can guide questions which will inform the assessment of altruism in future HIV cure-related research.

Keywords: Altruism; Clinical research; HIV cure Research; HIV research; Scoping review.

Publication types

Review

Abstract

Publication types

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