Karine Dubé, Sara Gianella, Susan Concha-Garcia, Susan J. Little, Andy Kaytes, Jeff Taylor, Kushagra Mathur, Sogol Javadi, Anshula Nathan, Hursch Patel, Stuart Luter, Sean Philpott-Jones, Brandon Brown & Davey Smith
BMC Medical Ethics 19 (1):83 (2018)
AbstractThe U.S. National Institute of Allergies and Infectious Diseases and the National Institute of Mental Health have a new research priority: inclusion of terminally ill persons living with HIV in HIV cure-related research. For example, the Last Gift is a clinical research study at the University of California San Diego for PLWHIV who have a terminal illness, with a prognosis of less than 6 months. As end-of-life HIV cure research is relatively new, the scientific community has a timely opportunity to examine the related ethical challenges. Following an extensive review of the EOL and HIV cure research ethics literature, combined with deliberation from various stakeholders and our experience with the Last Gift study to date, we outline considerations to ensure that such research with terminally ill PLWHIV remains ethical, focusing on five topics: 1) protecting autonomy through informed consent, 2) avoiding exploitation and fostering altruism, 3) maintaining a favorable benefits/risks balance, 4) safeguarding against vulnerability through patient-participant centeredness, and 5) ensuring the acceptance of next-of-kin/loved ones and community stakeholders. EOL HIV cure-related research can be performed ethically and effectively by anticipating key issues that may arise. While not unique to the fields of EOL or HIV cure-related research, the considerations highlighted can help us support a new research approach. We must honor the lives of PLWHIV whose involvement in research can provide the knowledge needed to achieve the dream of making HIV infection curable.
Similar books and articles
Synergies, Tensions and Challenges in HIV Prevention, Treatment and Cure Research: Exploratory Conversations with HIV Experts in South Africa.Keymanthri Moodley, Theresa Rossouw, Ciara Staunton & Christopher J. Colvin - 2016 - BMC Medical Ethics 17 (1):26.
The Foundations of Attitudes About Animal Research.Donald A. Saucier & Mary E. Cain - 2006 - Ethics and Behavior 16 (2):117 – 133.
Informed Consent to HIV Cure Research.Danielle Bromwich & Joseph R. Millum - 2017 - Journal of Medical Ethics 43 (2):108-113.
The Ethics of Talking About ‘HIV Cure’.Stuart Rennie, Mark Siedner, Joseph D. Tucker & Keymanthri Moodley - 2015 - BMC Medical Ethics 16 (1):18.
Ethical Aspects of Research Into Alzheimer Disease. A European Delphi Study Focused on Genetic and Non-Genetic Research.A. van der Vorm, M. J. F. J. Vernooij-Dassen, P. G. Kehoe, M. G. M. O. Rikkert, E. van Leeuwen & W. J. M. Dekkers - 2009 - Journal of Medical Ethics 35 (2):140-144.
Ethical Issues in Adolescents' Sexual and Reproductive Health Research in Nigeria.Morenike Oluwatoyin Folayan, Bridget Haire, Abigail Harrison, Morolake Odetoyingbo, Olawunmi Fatusi & Brandon Brown - 2015 - Developing World Bioethics 15 (3):191-198.
The Unique Ethical Challenges of Conducting Research in the Rehabilitation Medicine Population.Jeff Blackmer - 2003 - BMC Medical Ethics 4 (1):1-6.
The Return of Results of Deceased Research Participants.Anne Marie Tassé - 2011 - Journal of Law, Medicine and Ethics 39 (4):621-630.
Research Involving Children: Some Ethical Issues.Sølvi Helseth & Åshild Slettebø - 2004 - Nursing Ethics 11 (3):298-299.
Health Research in Complex Emergencies: A Humanitarian Imperative. [REVIEW]John D. Pringle & Donald C. Cole - 2009 - Journal of Academic Ethics 7 (1-2):115-123.
Ethics in Neonatal Pain Research.Anna Axelin & Sanna Salanterä - 2008 - Nursing Ethics 15 (4):492-499.
Ethical Considerations in Qualitative Case Study Research Recruiting Participants with Profound Intellectual Disabilities.David Haines - 2017 - Research Ethics 13 (3-4):219-232.
Biomedical Research and Beyond: Expanding the Ethics of Inquiry.Christopher O. Tollefsen - 2007 - Routledge.
Ethics and the Life Sciences: Special Conference Supplement, Journal of Philosophical Research.[author unknown] - forthcoming - Book.
Added to PP
Historical graph of downloads
Citations of this work
Reconceptualising Risk–Benefit Analyses: The Case of HIV Cure Research.Robert Steel - 2020 - Journal of Medical Ethics 46 (3):212-219.
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.Karine Dubé, Davey Smith, Brandon Brown, Susan Little, Steven Hendrickx, Stephen A. Rawlings, Samuel Ndukwe, Hursch Patel, Christopher Christensen, Andy Kaytes, Jeff Taylor, Susanna Concha-Garcia, Sara Gianella & John Kanazawa - 2022 - BMC Medical Ethics 23 (1):1-17.
Lessons Learned From the Last Gift Study: Ethical and Practical Challenges Faced While Conducting HIV Cure-Related Research at the End of Life.John Kanazawa, Stephen A. Rawlings, Steven Hendrickx, Sara Gianella, Susanna Concha-Garcia, Jeff Taylor, Andy Kaytes, Hursch Patel, Samuel Ndukwe, Susan J. Little, Davey Smith & Karine Dubé - forthcoming - Journal of Medical Ethics.
References found in this work
Misunderstanding in Clinical Research: Distinguishing Therapeutic Misconception, Therapeutic Misestimation, & Therapeutic Optimism.Sam Horng & Christine Grady - 2003 - IRB: Ethics & Human Research 25 (1):11.
When Are Research Risks Reasonable in Relation to Anticipated Benefits?Charles Weijer & Paul B. Miller - unknown