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. 2020 Oct;15(4):235-243.
doi: 10.1177/1556264620933766. Epub 2020 Jun 19.

Informing Informed Consent for HIV Research

Laura M Campbell  1 , Emily W Paolillo  1 , Robert Bryan  2 , Jennifer Marquie-Beck  2 , David J Moore  2 , Camille Nebeker  3   4 , Raeanne C Moore  2
Affiliations

Informing Informed Consent for HIV Research

Laura M Campbell et al. J Empir Res Hum Res Ethics. 2020 Oct.

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.

Keywords: HIV/AIDS; bioethics; clinical research; human subjects protection; mental health; research ethics; research integrity; vulnerable populations.

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