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 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.

Approaches to Death and Dying

2015 ◽  
Vol 70 (3) ◽  
pp. 301-316 ◽  
Author(s):  
Darla D. Beaty
Keyword(s):  
United States ◽  
End Of Life ◽  
Ethical Issues ◽  
Life Experiences ◽  
Death And Dying ◽  
The United States ◽  
Political Factors ◽  
Faith Based ◽  
Islam And Christianity ◽  
End Of Life Decision

Three principles that guide the bioethics movement in the United States and other Western societies apply to the approaches of death and dying in both the United States and Turkey. These three principles, Autonomy, Beneficence, and Justice, are reflected in the practices of people in both countries. The issue of autonomy is of greater concern to those in the United States, while decisions are made entirely with family and physician involvement in Turkey. Beneficence and Justice can be identified as ethical issues in both countries. Similarities with end-of-life experiences are linked by faith-based beliefs of Islam and Christianity. Differences in sociocultural influences, such as policies about advance directives in the United States, account for differences in end-of-life decision making. This article examines the spiritual, cultural, legal, and political factors that inform the experience of people in Turkey and in the United States when death is at hand.

scholarly journals 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

PLoS ONE ◽  
2021 ◽  
Vol 16 (5) ◽  
pp. e0250882
Author(s):  
Sogol S. Javadi ◽  
Kushagra Mathur ◽  
Susanna Concha-Garcia ◽  
Hursch Patel ◽  
Kelly E. Perry ◽  
...  
Keyword(s):  
Focus Group ◽  
End Of Life ◽  
Personal Growth ◽  
Hiv Cure ◽  
Next Of Kin ◽  
Focus Group Study ◽  
Related Research ◽  
Small Focus ◽  
The University ◽  
Study Participants

As end-of-life (EOL) HIV cure-related research expands, understanding perspectives of participants’ next-of-kin (NOK) is critical to maintaining ethical study conduct. We conducted two small focus groups and two one-on-one interviews using focus group guides with the NOK of Last Gift study participants at the University of California, San Diego (UCSD). Participating NOK included six individuals (n = 5 male and n = 1 female), including a grandmother, grandfather, partner, spouse, and two close friends. Researchers double-coded the transcripts manually for overarching themes and sub-themes using an inductive approach. We identified six key themes: 1) NOK had an accurate, positive understanding of the Last Gift clinical study; 2) NOK felt the study was conducted ethically; 3) Perceived benefits for NOK included support navigating the dying/grieving process and personal growth; 4) Perceived drawbacks included increased sadness, emotional stress, conflicted wishes between NOK and study participants, and concerns around potential invasiveness of study procedures at the EOL; 5) NOK expressed pride in loved ones’ altruism; and 6) NOK provided suggestions to improve the Last Gift study, including better communication between staff and themselves. These findings provide a framework for ethical implementation of future EOL HIV cure-related research involving NOK.

Ethnohistory's Ethnohistory

2010 ◽  
Vol 34 (2) ◽  
pp. 113-128
Author(s):  
Michael E. Harkin
Keyword(s):  
United States ◽  
Ethical Issues ◽  
Theoretical Orientation ◽  
Historical Analysis ◽  
The United States ◽  
Ethnographic Research ◽  
European Contact ◽  
Documentary Sources ◽  
Research Areas ◽  
Foundational Work

This article examines the first decades of the field of ethnohistory as it developed in the United States. It participated in the general rapprochement between history and anthropology of mid-twentieth-century social science. However, unlike parallel developments in Europe and in other research areas, ethnohistory specifically arose out of the study of American Indian communities in the era of the Indian Claims Commission. Thus ethnohistory developed from a pragmatic rather than a theoretical orientation, with practitioners testifying both in favor of and against claims. Methodology was flexible, with both documentary sources and ethnographic methods employed to the degree that each was feasible. One way that ethnohistory was innovative was the degree to which women played prominent roles in its development. By the end of the first decade, the field was becoming broader and more willing to engage both theoretical and ethical issues raised by the foundational work. In particular, the geographic scope began to reach well beyond North America, especially to Latin America, where archival resources and the opportunities for ethnographic research were plentiful, but also to areas such as Melanesia, where recent European contact allowed researchers to observe the early postcontact period directly and to address the associated theoretical questions with greater authority. Ethnohistory is thus an important example of a field of study that grew organically without an overarching figure or conscious plan but that nevertheless came to engage central issues in cultural and historical analysis.

scholarly journals Women's considerations and experiences for breast cancer screening and surveillance during the COVID-19 pandemic in the United States: A focus group study

2021 ◽  
Vol 151 ◽  
pp. 106542
Author(s):  
Karen E. Schifferdecker ◽  
Danielle Vaclavik ◽  
Karen J. Wernli ◽  
Diana S.M. Buist ◽  
Karla Kerlikowske ◽  
...  
Keyword(s):  
Breast Cancer ◽  
United States ◽  
Cancer Screening ◽  
Focus Group ◽  
Breast Cancer Screening ◽  
The United States ◽  
Focus Group Study ◽  
Screening And Surveillance

scholarly journals Family caregiving and place of death: Insights from cross-national analysis of the Harmonized End of Life Data

2020 ◽  
Author(s):  
Jennifer Ailshire ◽  
Margarita Osuna ◽  
Jenny Wilkens ◽  
Jinkook Lee
Keyword(s):  
United States ◽  
Older Adults ◽  
Nursing Home ◽  
End Of Life ◽  
Family Caregiving ◽  
The United States ◽  
Place Of Death ◽  
Life Data ◽  
Cross National ◽  
At Home

Abstract Objectives Family is largely overlooked in research on factors associated with place of death among older adults. We determine if family caregiving at the end of life is associated with place of death in the United States and Europe. Methods We use the Harmonized End of Life data sets developed by the Gateway to Global Aging Data for the Survey of Health, Ageing and Retirement in Europe (SHARE) and the Health and Retirement Study (HRS). We conducted multinomial logistic regression on 7,113 decedents from 18 European countries and 3,031 decedents from the United States to determine if family caregiving, defined based on assistance with activities of daily living, was associated with death at home versus at a hospital or nursing home. Results Family caregiving was associated with reduced odds of dying in a hospital and nursing home, relative to dying at home in both the United States and Europe. Care from a spouse/partner or child/grandchild was both more common and more strongly associated with place of death than care from other relatives. Associations between family caregiving and place of death were generally consistent across European welfare regimes. Discussion This cross-national examination of family caregiving indicates that family-based support is universally important in determining where older adults die. In both the United States and in Europe, most care provided during a long-term illness or disability is provided by family caregivers, and it is clear families exert tremendous influence on place of death.

End-of-Life Care behind Bars

2002 ◽  
Vol 10 (3) ◽  
pp. 233-241 ◽  
Author(s):  
Phyllis B. Taylor
Keyword(s):  
United States ◽  
End Of Life ◽  
End Of Life Care ◽  
The United States ◽  
Chronic Illnesses ◽  
Direct Result ◽  
Life Care ◽  
Prison Health ◽  
The Many ◽  
Changing Demographics

More people than ever before are being incarcerated in the United States. Many inmates are infected with HIV and hepatitis C. Sentences are increasing in length. Prison health care is now having to cope with the many chronic illnesses associated with an ill and aging population. The growth of end-of-life care programs in corrections in the United States is a direct result of the changing demographics of inmates. This article examines the need for end-of-life care behind bars and discusses selected hospice programs.

scholarly journals PRACTICE OF IRVING JOHN GILL MODERNISM

2021 ◽  
Vol 11 (1) ◽  
pp. 143-159
Author(s):  
Vasily D. FILIPPOV
Keyword(s):  
United States ◽  
Los Angeles ◽  
End Of Life ◽  
New Technologies ◽  
Residential Buildings ◽  
The United States ◽  
World Exhibition ◽  
The Ideal ◽  
Life Projects

The article is devoted to the work of Irving John Gill during his heyday, and then in conditions when the principles of modernism discovered by him, due to the lack of society’s need for new architecture in the United States, were not needed in this country - from 1909 until his death in 1936. New technologies used by Gill in the construction of public and residential buildings from concrete are described as well as his unsuccessful participation in the Panama-California World Exhibition of 1915-191, the construction near Los Angeles of the “ideal” city of Torrance and end-of-life projects. The reasons why Gill did not become the leader of the American and one of the leaders of world architecture are discussed, and his work is still controversial.

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