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. 2018 Oct 20;19(1):83.
doi: 10.1186/s12910-018-0321-2.

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

Karine Dubé  1 , Sara Gianella  2   3 , Susan Concha-Garcia  2   3 , Susan J Little  2 , Andy Kaytes  4 , Jeff Taylor  4   5 , Kushagra Mathur  3 , Sogol Javadi  3 , Anshula Nathan  6 , Hursch Patel  6 , Stuart Luter  6 , Sean Philpott-Jones  7 , Brandon Brown  8 , Davey Smith  2   3
Affiliations

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

Karine Dubé et al. BMC Med Ethics. .

Abstract

Background: 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.

Discussion: 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.

Conclusion: 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.

Keywords: Altruism; End-of-life (EOL); Ethical considerations; HIV cure research; Last gift; Rapid research autopsy.

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Conflict of interest statement

Ethics approval and consent to participate

Not applicable. This manuscript did not involve human participants, human data or human tissue.

Consent for publication

Not applicable. This manuscript does not contain any individual person’s data not contained in the peer-reviewed literature.

Competing interests

The authors declare that they have no competing interests.

Publisher’s Note

Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

Figures

Fig. 1
Fig. 1
The Last Gift logo was designed by Andy Kaytes, HIV activist and chair of the AntiViral Research Center Community Advisory Board. Each piece of the puzzle represents one Last Gift participant
See this image and copyright information in PMC

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