Informing Informed Consent for HIV Research

Informing Informed Consent for HIV Research
Research Article
Laura M. Campbell, Emily W. Paolillo, Robert Bryan, Jennifer Marquie-Beck, David J. Moore, Camille Nebeker, Raeanne C. Moore
Journal of Empirical Research on Human Research Ethics, 19 June 2020
Abstract
“Respect for Persons” is an ethical principle demonstrated through the informed consent process. Participants at a large HIV research center were surveyed to identify important aspects of the consent process. Persons with and without HIV (n = 103) completed a short pre/post questionnaire with both open-ended and forced choice response options. Qualitative analysis resulted in eleven themes about the most important consent elements which did not differ by HIV serostatus. Overall, participants rated the informed consent content and presentation by research staff as “extremely informative” and found the consent information to be “extremely consistent” with their study experience. Study results support the value of an interactive process and can be used to inform the design of a standardized, digital consent process.

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