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. 2017 Jan 25;12(1):e0170112. doi: 10.1371/journal.pone.0170112

Table 6. Perceived Benefits of HIV Cure Research from Key Informants (People Living with HIV, Clinician-Researchers and Policy-Makers/Bioethicists, n = 36), United States (2015–2016).

Themes Endorsements Quotations
No Expectations of Direct Benefits Policy-Maker/Bioethicist “There are no benefits in terms of changing the HIV disease course for that particular person. I doubt that any of these will lead to HIV cure or benefits in terms of how they are treated at this point in time. If there are any benefits, they could be more indirect from engagement with medical staff or getting extra labs that they would not have gotten otherwise. [It’s] [v]ery unlikely that there will be any direct benefits”
Policy-Maker/Bioethicist “There might be some indirect benefits for these early trials. Proof-of-concept studies and types of modalities carry considerable amount of risks. There are no direct benefits [and we] need to manage expectations.
Policy-Maker/Bioethicist “At this early, exploratory stage of development, there can be no anticipation of direct benefit to participants. There is the potential for a general, societal benefit of furthering scientific knowledge”
Societal Benefits:
Advancing Scientific Knowledge People Living with HIV “I think all knowledge is important and the only way that we learn in this world is through failure so I do feel that early clinical trials now (…) What has always motivated me is that every bit of information can help somebody else”
“Being part of ground breaking research is huge for me!
“Increasing the common good and helping to advance knowledge”
“The most important part of joining any study for me is the chance to help forward the science and knowledge. . . The hope for future generations”
Personal Benefits:
Psychological Benefits Person Living with HIV “The benefits to me were emotional knowing and believing that I helped further medical knowledge. In simplistic terms, the researcher told me that the virus returned and we stayed in touch. The researcher said to me: “Do not underestimate… you have had a profound impact on medical research because we have found information that we would not have been able to know before. And more information than just simplistically about this particular scenario.(. . .) I felt and still feel very satisfied that I participated and did that”
Intermediate Successes Clinician-Researcher “The Sangamo-type trials, there is a reasonable expectation that they might give a benefit to the participant’s baseline immune function (…) The HIV may not be completely gone, but the therapy has helped the body control it better (…) And this is a bit of an aside, but I think in the field of course [what] you worry about is how long it will take all of us to succeed and we really don’t know. You hope that there will be intermediate successes along the way”
Information and Education Person Living with HIV “I think that the benefit is education. We are not educated enough. And even though this thing has been around for years and years, we still need the education. There is not a lot of knowledge. There is a lot of stigma because there is a lot of ignorance. Because people don’t know. Even among doctors”