Chicago — LGBTQ teens feel more comfortable participating in sexual health and HIV prevention research than they do with routine everyday events, like taking a test or getting blood drawn, reports a new Northwestern University study published in the Journal of Adolescent Health.
Yet, despite being at a disproportionately high risk of HIV and other STIs, unplanned pregnancy, and drug and alcohol use, LGBTQ teens are underrepresented in health and medical research. In making decisions about research approval, Institutional Review Boards (IRBs) evaluate whether a study would pose more risks to participants than they normally encounter in everyday life experiences. Often, IRBs consider sexual health research procedures to be too risky for teens and may not approve LGBTQ health research without requiring parental permission — a requirement that, according to the Northwestern study, would only deter LGBTQ teens from participating.
The study, led by Dr. Kathryn Macapagal, a research assistant professor of Medical Social Sciences at Northwestern and faculty member at the Institute of Sexual and Gender Minority Health and Wellbeing, surveyed 616 sexual and gender minority (SGM) youth between the ages of 14-17. Participants were recruited through Facebook, Twitter, and Instagram, and completed a survey in which they were asked to compare their comfort with common sexual health research procedures to everyday events (such as doing homework, going to the doctor for a routine checkup, standing in a long line at the store, or using social media).
“Excluding SGM teens from sexual health and HIV prevention research on the basis that it’s too risky or uncomfortable for them prohibits us from understanding why they are so disproportionately affected by poor health outcomes,” said Dr. Macapagal. “Also, our findings suggest that asking for parental permission to be in sexual health research is itself a risk for SGM teens who would likely need to come out to their parents in order to participate,” she shared.
For LGBTQ teens, coming out to parents who are unsupportive can lead to consequences such as physical and emotional abuse and rejection. According to Dr. Macapagal, “this danger is a huge, huge barrier to researching youth who are vulnerable to so many health issues that are not well understood.”
The Northwestern study is among the first to compare routine everyday activities to sexual health research procedures, and sets a precedent by seeking out teens’ perspectives on research that can affect their health and wellbeing. “This information is crucial because it can help IRBs and researchers make evidence-based decisions about whether it’s safe for LGBTQ teens to participate in sexual health research — research that, one day, may help save lives,” shared Dr. Macapagal.
Other authors on the paper include Emily Bettin, Margaret Matson, Dr. Ashley Kraus, Dr. Celia Fisher, and Dr. Brian Mustanski. This research was supported by the National Institute on Minority Health and Health Disparities of the National Institutes of Health under award R01MD009561 (PIs:Mustanski & Fisher).