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,Danielle Campbell,John Kanazawa,David R. Smith,Sara Gianella,Judith D. Auerbach,Parya Saberi,John A. Sauceda +17 more
TLDR
A scoping review of altruism in general, clinical research, cancer, and HIV clinical research–including the HIV prevention, treatment, and cure-related research fields is conducted to better contextualize and understand how altruism is or could be operationalized in HIV cure- related research.Abstract:
Author(s): Dube, Karine; Perry, Kelly E; Mathur, Kushagra; Lo, Megan; Javadi, Sogol S; Patel, Hursch; Concha-Garcia, Susanna; Taylor, Jeff; Kaytes, Andy; Dee, Lynda; Campbell, Danielle; Kanazawa, John; Smith, David; Gianella, Sara; Auerbach, Judith D; Saberi, Parya; Sauceda, John A | Abstract: IntroductionThe 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.MethodsWe 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.DiscussionAltruism 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.ConclusionLessons learned from various research fields can guide questions which will inform the assessment of altruism in future HIV cure-related research.read more
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"[It] is now my responsibility to fulfill that wish:" Clinical and rapid autopsy staff members' experiences and perceptions of HIV reservoir research at the end of life
Kelly E. Perry,Jeff Taylor,Hursch Patel,Sogol S. Javadi,Kushagra Mathur,Andy Kaytes,Susanna Concha-Garcia,Susan J. Little,Davey M. Smith,Sara Gianella,Karine Dubé +10 more
TL;DR: Understanding staff members’ nuanced emotional and procedural experiences is crucial to the Last Gift study’s sustainability and will inform similar cure research studies conducted with people living with HIV at the end of life.
Journal ArticleDOI
Ethics of HIV cure research: an unfinished agenda.
Karine Dubé,John Kanazawa,Jeffrey R. Taylor,Lynda Dee,Nora Jones,Christopher Roebuck,Laurie Sylla,Michael Louella,Jan Kosmyna,David Kelly,Orbit Clanton,David Palm,Danielle Campbell,Morénike Giwa Onaiwu,Morénike Giwa Onaiwu,Hursch Patel,Samuel Ndukwe,Laney Henley,Mallory O. Johnson,Parya Saberi,Brandon Brown,John A. Sauceda,Jeremy Sugarman +22 more
TL;DR: Dube et al. as discussed by the authors conducted a scoping review of the growing HIV cure research ethics literature, focusing on articles published in English peer-reviewed journals from 2013 to 2021.
Journal ArticleDOI
Lessons for Understanding Central Nervous System HIV Reservoirs from the Last Gift Program
Patricia K. Riggs,Antoine Chaillon,Guochun Jiang,Scott Letendre,Yuyang Tang,Jeff Taylor,Andy Kaytes,Davey M. Smith,Karine Dubé,Sara Gianella +9 more
TL;DR: The Last Gift program was developed to address these needs by enrolling altruistic people with HIV (PWH) at the end of life who agree to rapid research autopsy as mentioned in this paper .
Journal ArticleDOI
Ethical and practical considerations for interventional HIV cure-related research at the end-of-life: A qualitative study with key stakeholders in the United States.
John Kanazawa,Sara Gianella,Susanna Concha-Garcia,Jeff Taylor,Andy Kaytes,Christopher Christensen,Hursch Patel,Samuel Ndukwe,Stephen A. Rawlings,Steven Hendrickx,Susan J. Little,Brandon Brown,Davey M. Smith,Karine Dubé +13 more
TL;DR: Kanazawa et al. as discussed by the authors conducted a qualitative empirical study to identify ethical and practical considerations for interventional HIV cure-related research at the end-of-life (EOL).
References
More filters
Journal ArticleDOI
The norm of reciprocity: a preliminary statement *
TL;DR: The notion of complementarity and reciprocity in functional theory is explored in this article, enabling a reanalysis of the concepts of "survival" and "exploitation" and the need to distinguish between complementarity, reciprocity, and the generalized moral norm of reciprocity.
Journal ArticleDOI
The end of AIDS: HIV infection as a chronic disease
TL;DR: Concerns are growing that the multimorbidity associated with HIV disease could affect healthy ageing and overwhelm some health-care systems, particularly those in resource-limited regions that have yet to develop a chronic care model fully.
Journal ArticleDOI
Social semantics: altruism, cooperation, mutualism, strong reciprocity and group selection.
TL;DR: The aim here is to address issues of semantic confusion that have arisen with research on the problem of cooperation, and to emphasize the need to distinguish between proximate (mechanism) and ultimate (survival value) explanations of behaviours.
Journal ArticleDOI
Information and participation preferences among cancer patients
TL;DR: Most patients in each age group displayed high levels of hope, preferences for open communication about their illness, and a desire for maximum amounts of information.
Journal ArticleDOI
Cochrane Update. 'Scoping the scope' of a cochrane review.
TL;DR: A crucial step in the systematic review process is to thoroughly define the scope of the research question, particularly one with a very broad topic scope, such as those edited by the Cochrane Public Health Group.