Members of the PRomoting Equity for Pregnant Adolescents in Research (PREPARE) team recently returned from a trip to Botswana and Malawi. This study is led by Principal Investigators (PI) Anne Lyerly, MD, MA, and Kristen Sullivan, PhD, MSW, MBA, of the UNC Center for Bioethics, and includes several UNC Bioethics faculty. While overseas, the PREPARE team met with co-Investigators and laid the groundwork for qualitative research with HIV-infected or at-risk pregnant adolescents to inform ethics guidance for advancing research with the population.
PREPARE builds on the work from Pregnancy and HIV/AIDS: Seeking Equitable Study, or PHASES, also led by Anne Lyerly as PI. PHASES developed ethics guidance for ethical inclusion of pregnant people in HIV and co-infections research. While PHASES is centered on all pregnant people in HIV studies, PREPARE focused on pregnant adolescents.
“Our qualitative research in PHASES really highlighted the need for research addressing the needs of pregnant adolescents in the context of HIV,” said PI Sullivan. “They face a higher risk of HIV infection in pregnancy than adult women, a higher risk of transmitting the virus to the fetus, and worse maternal and neonatal outcomes. And yet, the evidence gap for preventing and treating HIV and co-infections in pregnancy is further magnified for adolescents. Ethically, it is both complicated and imperative to close this evidence gap.”
The PREPARE team will conduct interviews in the United States and around the globe with adolescents that are experiencing or have experienced pregnancy. These interviews will provide insight about undergoing HIV and pregnancy for adolescents, their views about research, and key considerations that would affect their willingness to participate in studies. The PREPARE team also continued work with a co-Investigator in Botswana, Dr. Mary Kasule, to facilitate interviews with stakeholders in the Botswana HIV research community such as investigators, IRB members, and policymakers.
The PREPARE Project is being conducted with the collaboration of UNC Project Malawi, the Botswana Sexual and Reproductive Health Initiative – part of the Botswana Harvard Partnership, the Botswana Baylor Children’s Clinical Centre of Excellence, and Children’s National Hospital in Washington D.C. PREPARE is also developing Youth Advisory Boards for each of the three sites. Five adolescents within the studied population will sit on each board and offer their input as the PREPARE team continues to publish their findings and write guidances, which the team hopes to launch in 2025.
“Our recent trips to Botswana and Malawi were absolutely inspiring,” continued Sullivan. “Now more than ever, I’m excited to elevate the voices of pregnant adolescents most affected by HIV and AIDS.”