Table 4.

Exemplar quotes: The voluntary nature of self-consent and reasons for and against

Voluntary self-consent Asking questions – easy (96%): “I would feel very comfortable because its best to just ask them and they’re only here to help.” “I would feel comfortable asking before taking part because I want to know what exactly I'm getting into.” Asking questions – difficult (4%): “I usually don't ask questions since I think they sound stupid.” Refusing participation – easy (87%): “I’m fine with saying no.” “Its my body and I make the final decision.” “The researchers expect some people to say no.” Refusing participation – difficult (13%): “I might find it difficult, but I’d eventually [say no].” “When it comes to saying no it may be a bit hard for me… I… don’t like disappointing others.”

Reasoned participation decision Health implications: “PrEP would allow hopefully another way to protect yourself from HIV. And it would give me another reason to be tested.” “[Whether I could] tolerate side effects.” “My only concern would be the pill affecting my bones, but in the video they said there would be check-ups every couple of months so I would always make sure to ask how my bones were doing.” “Its important to take into account risks when starting any medication.” “[Risks are] nothing compared to living with HIV.” Perceived HIV risk: “I would think about where it would fit in my lifestyle and if I needed it.” “How sexually active I’ve been recently and the likelihood of me becoming active.” “I’d weight risks and benefits, both personal and for others.” Privacy Risks: “I would not want to participate for fear of my parents and peers learning that I am taking HIV prevention medications.” Logistics: “[Too difficult] to take the pill everyday.” “I wouldn’t know how to get there [to appointments] without telling my parents.” “The HIV test and blood draw don’t seem too bothersome but coming in to the study could be hard if your parents didn’t know about your participation.”

Obligation for post-trial PrEP access or referral Should be required: “Stopping medications could be dangerous.” “It would be a lot harder for teens whose parents don’t know to get access.” “Since we help and put ourselves at risk (although it may be low) I feel they should help the teens out to return the favor.” Investigator obligations if not required: “I’m not sure if its necessarily [the researcher’s] responsibility, but teens should be able to get information on how they could get it after the study is over.” “Make it clear at the beginning that it does not continue.”