Lessons Learned: Engaging Community in the use of Molecular HIV Surveillance Data | Fireside Chat

Live streamed on 7/21/22, check out this fascinating conversation with the authors of “Lessons Learned from Community Engagement Regarding Phylodynamic Research with Molecular HIV Surveillance Data,” a recently-published paper discussing the importance of consulting people living with HIV (PLHIV) about the research methods that affect our lives.

Speakers are Drs. Alic Shook and Josh Herbeck, Brian Minalga, and Diana Tordoff; moderated by PWN Co-Director Naina Khanna. This event was hosted by Positive Women’s Network – USA, Legacy Project, US People Living with HIV Caucus, member networks of the Caucus, and the Transgender Law Center/Positively Trans.

“As advocates for the rights of PLHIV, we have been working to stop the use of Molecular HIV Surveillance (MHS) for years. Our concerns include lack of informed consent, lack of consistent protections for sensitive data, and criminalization within the context of stigma, structural racism, and medical mistrust.

This is why it’s so poignant that a group of researchers using data collected from MHS decided to stop and listen to our concerns. Instead of publishing their original study, they asked themselves crucial questions about ethics in research and decided to pause their project, publishing instead the lessons they learned through this process.”

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