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

Dubé, Karine; Perry, Kelly E.; Mathur, Kushagra; Lo, Megan; Javadi, Sogol Stephanie; 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

doi:10.1016/j.jve.2020.100008

Cited by 21 publications

(20 citation statements)

References 116 publications

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“…As evidenced with the Last Gift study, the participation of terminally-ill PWH in this research confers a deep sense of meaning and purpose [35][36][37]. Scientific altruism, or the desire to help others in the future, is a motivating factor in HIV cure-related research at the EOL and has long been a hallmark of the HIV/AIDS community [3,38,39].…”

Section: Discussionmentioning

confidence: 99%

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

et al. 2021

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Background A unique window of opportunity currently exists to generate ethical and practical considerations presented by interventional HIV cure-related research at the end-of-life (EOL). Because participants would enroll in these studies for almost completely altruistic reasons, they are owed the highest ethical standards, safeguards, and protections. This qualitative empirical ethics study sought to identify ethical and practical considerations for interventional HIV cure-related research at the EOL. Methods and findings We conducted 20 in-depth interviews and three virtual focus groups (N = 36) with four key stakeholder groups in the United States: 1) bioethicists, 2) people with HIV, 3) HIV care providers, and 4) HIV cure researchers. This study produced six key themes to guide the ethical implementation of interventional HIV cure-related research at the EOL: 1) all stakeholder groups supported this research conditioned upon a clearly delineated respect for participant contribution and autonomy, participant understanding and comprehension of the risks associated with the specific intervention(s) to be tested, and broad community support for testing of the proposed intervention(s); 2) to ensure acceptable benefit-risk profiles, researchers should focus on limiting the risks of unintended effects and minimizing undue pain and suffering at the EOL; 3) only well-vetted interventions that are supported by solid pre-clinical data should be tested in the EOL translational research model; 4) the informed consent process must be robust and include process consent; 5) research protocols should be flexible and adopt a patient/participant centered approach to minimize burdens and ensure their overall comfort and safety; and 6) a participant’s next-of-kin/loved ones should be a major focus of EOL research but only if the participant consents to such involvement. Conclusions To our knowledge, this empirical ethics study generated the first ethical and practical considerations for interventional HIV cure-related research at the EOL. The ethical complexities of such research must be considered now. We must navigate this ethical conundrum so that we are good stewards of the participants’ extremely altruistic gifts by maximizing the impact and social value of this research. We hope that this study will serve as the foundation for future research and discussion on this topic.

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Section: Discussionmentioning

confidence: 99%

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

et al. 2021

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“…So, I think it is a very reasonable thing to do to try to accommodate those interests. – Researcher #101 Altruism has long been a major motivating factor for PWH to engage in research [ 24 ]. A researcher (#16) noted that EOL HIV cure research may simply represent “a natural progression” for PWH.…”

Section: Resultsmentioning

confidence: 99%

Ethical and practical considerations for HIV cure-related research at the end-of-life: a qualitative interview and focus group study in the United States

et al. 2022

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Background One of the next frontiers in HIV research is focused on finding a cure. A new priority includes people with HIV (PWH) with non-AIDS terminal illnesses who are willing to donate their bodies at the end-of-life (EOL) to advance the search towards an HIV cure. We endeavored to understand perceptions of this research and to identify ethical and practical considerations relevant to implementing it. Methods We conducted 20 in-depth interviews and 3 virtual focus groups among four types of key stakeholders in the United States (PWH, biomedical HIV cure researchers, HIV clinicians, and bioethicists) to obtain triangulated viewpoints because little was known about the ethics of this topic. Each group was queried as to ethical considerations, safeguards, and protections for conducting HIV cure-related research at the EOL to ensure this research remains acceptable. Results All four key stakeholder groups generally supported HIV cure-related research conducted at the EOL because of the history of altruism within the PWH community and the potential for substantial scientific knowledge to be gained. Our informants expressed that: (1) Strong stakeholder and community involvement are integral to the ethical and effective implementation, as well as the social acceptability of this research; (2) PWH approaching the EOL should not inherently be considered a vulnerable class and their autonomy must be respected when choosing to participate in HIV cure-related research at the EOL; (3) Greater diversity among study participants, as well as multi-disciplinary research teams, is necessitated by HIV cure-related research at the EOL; (4) The sensitive nature of this research warrants robust oversight to ensure a favorable risk/benefit balance and to minimize the possibility of therapeutic misconception or undue influence; and (5) Research protocols should remain flexible to accommodate participants’ comfort and needs at the EOL. Conclusion Because of the ethical issues presented by HIV cure-related research at the EOL, robust ethical safeguards are of utmost importance. The proposed ethical and practical considerations presented herein is a first step in determining the best way to maximize this research’s impact and social value. More much inquiry will need to be directed towards understanding context-specific and cultural considerations for implementing EOL HIV cure research in diverse settings.

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“…Another challenge for early-phase HIV cure trials relates to the extent to which participants are motivated by altruism [ 94 ]. When participation is motivated by altruism, participants may be willing to accept greater risk, thus lessening concern regarding potential exploitation [ 57 , 95 ].…”

Section: Discussionmentioning

confidence: 99%

“…Nevertheless, some risks will be difficult, if not impossible, to capture in short-term clinical trials [ 38 ]. For example, some trials may carry long-term toxicity risks such as teratogenicity and gene toxicity that could manifest years after a trial has been completed [ 20 , 94 ]. For most interventions, the United States Food and Drug Administration (FDA) has considered PLWH as “otherwise healthy volunteers” to ascertain acceptable risks, thereby decreasing the threshold of risk that could be tolerated in this population [ 22 , 23 ].…”

Section: Discussionmentioning

confidence: 99%

“…These psychosocial benefits include improved sense of purpose, positive outlook, hope, and emotional support [ 26 ]. Understanding the altruism among many HIV cure trial participants helps contextualize the impact of trial participation on people’s lives [ 94 , 107 ]. Providing an activist’s argument that participant values should guide benefit/risk ratio calculations, Evans claims these altruistic benefits should be recognized because they empower PLWH to assume both self-agency and autonomy as well as risks [ 107 ].…”

Section: Discussionmentioning

confidence: 99%

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Ethics of HIV cure research: an unfinished agenda

et al. 2021

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Background The pursuit of a cure for HIV is a high priority for researchers, funding agencies, governments and people living with HIV (PLWH). To date, over 250 biomedical studies worldwide are or have been related to discovering a safe, effective, and scalable HIV cure, most of which are early translational research and experimental medicine. As HIV cure research increases, it is critical to identify and address the ethical challenges posed by this research. Methods We 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. We extracted and summarized key developments in the ethics of HIV cure research. Twelve community advocates actively engaged in HIV cure research provided input on this summary and suggested areas warranting further ethical inquiry and foresight via email exchange and video conferencing. Discussion Despite substantial scholarship related to the ethics of HIV cure research, additional attention should focus on emerging issues in six categories of ethical issues: (1) social value (ongoing and emerging biomedical research and scalability considerations); (2) scientific validity (study design issues, such as the use of analytical treatment interruptions and placebos); (3) fair selection of participants (equity and justice considerations); (4) favorable benefit/risk balance (early phase research, benefit-risk balance, risk perception, psychological risks, and pediatric research); (5) informed consent (attention to language, decision-making, informed consent processes and scientific uncertainty); and (6) respect for enrolled participants and community (perspectives of people living with HIV and affected communities and representation). Conclusion HIV cure research ethics has an unfinished agenda. Scientific research and bioethics should work in tandem to advance ethical HIV cure research. Because the science of HIV cure research will continue to rapidly advance, ethical considerations of the major themes we identified will need to be revisited and refined over time.

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

Cited by 21 publications

References 116 publications

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

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

Ethical and practical considerations for HIV cure-related research at the end-of-life: a qualitative interview and focus group study in the United States

Ethics of HIV cure research: an unfinished agenda

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