Attitudes and perceptions of next-of-kin/loved ones toward end-of-life HIV cure-related research: A qualitative focus group study in Southern California

Javadi, Sogol Stephanie; Mathur, Kushagra; Concha-Garcia, Susanna; Patel, Hursch; Perry, Kelly E.; Lo, Megan; Taylor, Jeff; Kaytes, Andy; Gianella, Sara; Smith, Davey M; Dubé, Karine

doi:10.1371/journal.pone.0250882

Cited by 10 publications

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References 47 publications

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“…One ethical tension presented with interventional HIV cure-related research at the EOL is the need to balance NOK/loved ones' desire for information/participation with the paramount autonomy of the study participant [44,45]. General consensus exists in the research literature that EOL care and, by extension, research should focus on the NOK/loved ones, as well as the participant themselves [41,42,46].…”

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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“…Further, our pool of HIV clinicians and researchers was severely limited by the COVID-19 pandemic. A valuable group of informants to include in this study would have been partners of PWH; however, our team has a separate ongoing study focused on perceptions of next-of-kin/loved ones around EOL HIV cure research [ 18 , 20 ]. Participants expressed overwhelming support for HIV cure-related research at the EOL, possibly because of our purposive sampling technique and our requirement that all informants be involved with, or have knowledge of, this research.…”

Section: Discussionmentioning

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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“…For example, a research cohort has been assembled in the “Last Gift Study” [ 56 ] that includes PLWH who are terminally-ill with a co-morbid condition (e.g., cancer, advanced heart disease, neurodegenerative disease) and seeks to characterize HIV reservoirs in the brain and deep tissues [ 57 – 59 ]. Drawing on a similar paradigm in the cancer field [ 60 ], a multi-disciplinary group of researchers outlined ethical considerations for conducting HIV cure research with PLWH at the end of life [ 57 ], including: (1) protecting autonomy through informed consent; (2) avoiding exploitation by fostering altruism; (3) preserving favorable benefit/risk balance; (4) safeguarding against vulnerability through participant-centeredness; and (5) involving next-of-kin/loved ones and community stakeholders [ 57 , 61 – 63 ]. Further, testing HIV cure research interventions in PLWH at the end of life would introduce important ethical complexities since terminally ill PLWH would undergo potentially risky interventions solely to advance science, and not in the hope of alleviating symptoms or prolonging life [ 57 , 64 ].…”

Section: Discussionmentioning

confidence: 99%

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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Attitudes and perceptions of next-of-kin/loved ones toward end-of-life HIV cure-related research: A qualitative focus group study in Southern California

Cited by 10 publications

References 47 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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