BMC Medical Ethics (Oct 2018)

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

  • 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

DOI
https://doi.org/10.1186/s12910-018-0321-2
Journal volume & issue
Vol. 19, no. 1
pp. 1 – 16

Abstract

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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.

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