scholarly journals 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

PLoS ONE ◽  
2021 ◽  
Vol 16 (7) ◽  
pp. e0254148
Author(s):  
John Kanazawa ◽  
Sara Gianella ◽  
Susanna Concha-Garcia ◽  
Jeff Taylor ◽  
Andy Kaytes ◽  
...  
Keyword(s):  
United States ◽  
End Of Life ◽  
Community Support ◽  
The United States ◽  
Empirical Ethics ◽  
Hiv Care ◽  
Hiv Cure ◽  
Related Research ◽  
Stakeholder Groups ◽  
The Impact

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.

scholarly journals 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

2022 ◽  
Vol 23 (1) ◽  
Author(s):  
John Kanazawa ◽  
Sara Gianella ◽  
Susanna Concha-Garcia ◽  
Jeff Taylor ◽  
Andy Kaytes ◽  
...  
Keyword(s):  
United States ◽  
End Of Life ◽  
Community Involvement ◽  
Ethical Issues ◽  
The United States ◽  
Hiv Cure ◽  
Undue Influence ◽  
Focus Group Study ◽  
Related Research ◽  
Context Specific

Abstract 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.

scholarly journals Sustainable End of Life Management of Crystalline Silicon and Thin Film Solar Photovoltaic Waste: The Impact of Transportation

2020 ◽  
Vol 10 (16) ◽  
pp. 5465 ◽  
Author(s):  
Ilke Celik ◽  
Marina Lunardi ◽  
Austen Frederickson ◽  
Richard Corkish
Keyword(s):  
Thin Film ◽  
United States ◽  
End Of Life ◽  
Crystalline Silicon ◽  
The United States ◽  
Hotspot Analysis ◽  
Material Recovery ◽  
Pv Module ◽  
Pv Modules ◽  
The Impact

This work provides economic and environmental analyses of transportation-related impacts of different photovoltaic (PV) module technologies at their end-of-life (EoL) phase. Our results show that crystalline silicon (c-Si) modules are the most economical PV technology (United States Dollars (USD) 2.3 per 1 m2 PV module (or 0.87 ¢/W) for transporting in the United States for 1000 km). Furthermore, we found that the financial costs of truck transportation for PV modules for 2000 km are only slightly more than for 1000 km. CO2-eq emissions associated with transport are a significant share of the EoL impacts, and those for copper indium gallium selenide (CIGS) PV modules are always higher than for c-Si and CdTe PV. Transportation associated CO2-eq emissions contribute 47%, 28%, and 40% of overall EoL impacts of c-Si, CdTe, and CIGS PV wastes, respectively. Overall, gasoline-fueled trucks have 65–95% more environmental impacts compared to alternative transportation options of the diesel and electric trains and ships. Finally, a hotspot analysis on the entire life cycle CO2-eq emissions of different PV technologies showed that the EoL phase-related emissions are more significant for thin-film PV modules compared to crystalline silicon PV technologies and, so, more environmentally friendly material recovery methods should be developed for thin film PV.

scholarly journals 1316. Gathering Trauma Narratives: A Qualitative Study on the Impact of Traumas on People Living with HIV (PLWH)

2019 ◽  
Vol 6 (Supplement_2) ◽  
pp. S475-S475
Author(s):  
Doris Pierson ◽  
Vaidehi Mujumdar ◽  
Brittany Briceño ◽  
Elaina Cummer ◽  
Kshipra Hemal ◽  
...  
Keyword(s):  
United States ◽  
Reproductive Health ◽  
Viral Suppression ◽  
The United States ◽  
Hiv Care ◽  
People Living With Hiv ◽  
Structured Interviews ◽  
Reproductive Intentions ◽  
Living With Hiv ◽  
The Impact

Abstract Background Trauma—emotional, physical, and psychological—is common and associated with increased risk behaviors, low rates of care engagement and viral suppression, and overall poor health outcomes for people living with HIV (PLWH). In the United States, there are limited data on how trauma affects reproductive health beliefs for PLWH and even less data on HIV providers’ understanding and consideration of these experiences in their approach to patients. Methods Fifteen semi-structured interviews were conducted with PLWH and nine semi-structured interviews were conducted with HIV care and service providers at an academic medical center in the Southeastern United States. Transcripts were analyzed using thematic analysis. Each transcript was coded by two investigators and discussed to ensure consensus. Results Participants’ narratives described diverse traumas, including sexual abuse (n = 6), the loss of a loved one (n = 8), and personal illness (n = 7). Types of trauma shared with providers included physical, sexual, illness, loss, and psychological. For patients, trauma was both a motivation for having children and a reason to stop having children. Providers perceived a variety of effects of trauma on both sexual behaviors and reproductive intentions. Reproductive counseling by HIV care providers (n = 5) focused on maintaining a healthy pregnancy and less on reproductive intentions prior to pregnancy. Reproductive discussions with pregnant female patients typically centered on reducing the risk of transmission in utero (including the importance of medication adherence to maintain viral suppression), what will happen during delivery, and breastfeeding risks. Reproductive discussions with males typically centered on preventing infection or re-infection of the mother. Conclusion PLWH interpret their trauma experiences differently, particularly when considering reproduction. Providers may not incorporate this information in counseling around reproductive health, highlighting the need fora trauma-informed healthcare practice that promotes awareness, education on the effect of past traumas on health, and access to appropriate resources. Disclosures All authors: No reported disclosures.

scholarly journals “I would really want to know that they had my back”: Transgender women’s perceptions of HIV cure-related research in the United States

PLoS ONE ◽  
2020 ◽  
Vol 15 (12) ◽  
pp. e0244490
Author(s):  
Tonia Poteat ◽  
Anushka Aqil ◽  
Dana Corbett ◽  
David Evans ◽  
Karine Dubé
Keyword(s):  
Undetectable Viral Load ◽  
The United States ◽  
Transgender Women ◽  
Test Subject ◽  
Hiv Treatment ◽  
Hiv Care ◽  
Hiv Cure ◽  
Related Research ◽  
Treatment Interruptions ◽  
Living With Hiv

Forty-four percent of Black transgender women are living with HIV, and many face challenges with HIV care engagement. An HIV cure has much to offer this population, however little HIV cure-related research has included them. We conducted 19 face-to-face in-depth interviews with 10 Black transgender women living with HIV. Interviews were audio recorded, transcribed verbatim, coded, and analyzed using content analysis. Our interview guide contained three categories: 1) perceptions of HIV cure-related research and participation, 2) perceptions of HIV treatment and treatment interruptions, and 3) considerations for transgender women and HIV cure-related research. Salient themes included skepticism about HIV cure strategies and limited benefits compared with an undetectable viral load. Willingness to interrupt HIV treatment for research was low and linked to being able to go back on the same HIV treatment without consequence when the study ended. Concerns about being a test subject and perceptions of risks versus benefits of various strategies also affected willingness to take part in HIV cure-related research. Centering the dignity and autonomy of research participants as well as building upon and supporting existing social networks were identified as important facilitators for engaging Black transgender women in HIV cure-related research. Specific to Black transgender women, other concerns included the desire for gender-affirming research staff, community-building among transgender women, and safety issues associated with risk of transphobic violence when traveling to study visits. Participants stressed the importance of HIV cure-related researchers providing accessible and complete information and expressing genuine care and concern for transgender communities.

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