ABSTRACT
Purpose: Adolescents/young adults (AYA) from racial/ethnic communities have high rates of HIV but little access to biomedical research, due to complexities around consent. Requirement of parental consent for participation in biomedical research is protective and strongly supported by parents, but in biomedical HIV prevention, minors are less likely to participate in research because of concerns about disclosure. Public deliberation (PD) is a process to obtain community input on complex policy issues, by bringing together AYA and adults, who have an investment in an issue, but with potentially opposing views, to provide education, clarify values, and facilitate discussion, reflection, and recommendations. To inform institutional review boards, institutions, and investigators, PDs were held with the goal of obtaining community perspectives and recommendations on minor consent for biomedical HIV prevention research from communities affected by youth HIV. Due to COVID-19 pandemic restrictions, we used an online format and conducted PDs across four evenings. We then conducted post-deliberation interviews to describe participants' experiences in the online PD. Methods: As part of an IRB approved PD, we conducted semi-structured interviews with youth and adult community members who had participated in the deliberations, held in Tampa and Baltimore. The interviews, which were conducted over Zoom, queried deliberants about their experiences voicing their perspectives, their comfort level, their degree of trust in the deliberation process, and ideas for how to better engage future deliberants. Interviews were audio-recorded, transcribed, and field notes were generated. Data were analyzed using thematic analysis. Results: We interviewed 13 community members: seven from Tampa (African American=3, White=3, Latinax=1;AYA=2) and six from Baltimore (African American=6;AYA=1). Facilitators: Deliberants from both communities indicated that personal connections were important for building consensus and understanding. When other participants shared personal stories and perspectives, deliberants were more receptive to hearing and accepting new ideas and opinions that differed from their own. Challenges: Tampa deliberants reported that they preferred an online deliberation because it helped overcome practical barriers to in-person deliberations, such as access to transportation and long commutes. Baltimore participants indicated they would have preferred in-person interactions to build trust, increase comfort, and augment engagement. Participants from both communities discussed distrust in research due to the historical legacy of racism in research and medicine. Due to this legacy, they reported that distrust influenced their views of minor-self-consent and impacted the deliberation process around building consensus. For example, concerns about coercion of minor human subjects influenced their views on minor consent. Recommendations: Participants recommend that strategies be developed to increase engagement in the virtual space. These strategies include use of (a) breakout sessions to increase comfort with sharing;(b) personal storytelling and reviewing group agreements to increase trust, (c) early polling activities to ensure engagement, (d) and asking adults to provide space for youth to voice their perspectives. Conclusions: While online public deliberation on sensitive topics with a vulnerable population is possible, it is important for researchers to focus on providing a safe environment, to acknowledge historical racism in research, and to use methods to maximally engage participants. Sources of Support: PCORI.
ABSTRACT
Background. Given that many youth and young adults utilize multiple orifices during sexual activity, testing for STIs from multiple anatomical sites can increase rates of diagnosis. However, during the COVID pandemic, obtaining oral swabs by clinical staff was deemed an unacceptable COVID transmission risk and was discontinued in our clinic. To circumvent this obstacle to diagnosis, clinic staff developed a workaround of obtaining patient collected pharyngeal swabs for STI testing. This abstract reviews the results of this pilot intervention. Methods. Patients presenting to an urban youth family planning/STI clinic who desired STI testing and ever engaged in oral sex were offered pharyngeal testing for chlamydia (CT) and gonorrhea (GC). Patients were instructed on how to obtain an oral sample, and subsequently sent outside of the clinic to obtain their individual sample. Chart review was conducted by clinic staff of a two month period during which this protocol was in place, and the following variables were collected: gender, sexual orientation, race/ethnicity, and STD testing results by anatomic site. Simple descriptive statistical analysis were used. Results. 146 patients received a GC/CT test from > 1 anatomical site, with 34 patients having > 1 positive result. All pharyngeal samples were self-collected. Four patients were positive for GC/CT from throat samples only (12% of positive tests). All were biologically female, including one transgender FTM. Sexual orientation was split evenly between bisexual and heterosexual. Reported race/ethnicity included two African-American, one white, and one “Filipino”. For comparison, of the overall subsample of patients with positive GC/CT results, patients identified as 53% female, 44% male, and 3% FTM;74% “straight”, 15% bisexual, 9% “gay”, and 3% did not disclose;29% white, 50% African-American, 21% unknown as other;and 11% Hispanic. Twelve patients were positive for GC/CT from the throat and either rectum and/or urine/vagina/ endocervix (35% of positive tests). Conclusion. Our experience demonstrates that obstacles created by the COVID crisis can be circumvented with creative strategies. We were able to pick up 12% and 35% of total infections by self-collected pharyngeal swabs in throat only and throat plus other sites, respectively.