Ethical considerations for HIV cure-related research at the end of life

BMC Medical Ethics - Tập 19 - Trang 1-16 - 2018
Karine Dubé1, Sara Gianella2,3, Susan Concha-Garcia2,3, Susan J Little2, Andy Kaytes4, Jeff Taylor4,5, Kushagra Mathur3, Sogol Javadi3, Anshula Nathan1, Hursch Patel1, Stuart Luter1, Sean Philpott-Jones6, Brandon Brown7, Davey Smith2,3
1Gillings School of Global Public Health, University of North Carolina, Chapel Hill, USA
2Division of Infectious Diseases and Global Public Health, University of California San Diego, La Jolla, USA
3AntiViral Research Center (AVRC), University of California San Diego, San Diego, USA
4AVRC Community Advisory Board, University of California San Diego, San Diego, USA
5HIV and Aging Research Project – Palm Springs (HARP-PS), Palm Springs, USA
6Department of Bioethics, Clarkson University, Schenectady, USA
7Center for Healthy Communities, Department of Social Medicine, Population, and Public Health, University of California Riverside School of Medicine, Riverside, USA

Tóm tắt

The U.S. National Institute of Allergies and Infectious Diseases (NIAID) and the National Institute of Mental Health (NIMH) have a new research priority: inclusion of terminally ill persons living with HIV (PLWHIV) in HIV cure-related research. For example, the Last Gift is a clinical research study at the University of California San Diego (UCSD) for PLWHIV who have a terminal illness, with a prognosis of less than 6 months. As end-of-life (EOL) 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 (biomedical researchers, PLWHIV, bioethicists, and socio-behavioral scientists) 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.

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