Kimberly Nelson, assistant professor of community health sciences, has received a five-year, $2.7 million grant from the National Institute of Mental Health for a study that will include a first-ever content analysis of state consent laws for minors seeking HIV and other sexually transmitted infections (STI) services in the United States. Nelson is the principal investigator of the study, which began in December. Julia Raifman, assistant professor of health law, policy & management, is a co-investigator.
Specifically, Nelson and the team of researchers will examine how these confidentiality laws relate to adolescents’ use of HIV/STI testing, treatment, and prevention services. The team will also examine adolescents’ awareness of the laws, what they think the laws should be, and how best to relay information about consent rights to youth. Youth ages 13-17 are disproportionately affected by HIV/STI, but concerns about the confidentiality of their medical records and beliefs that guardian permission will be required prevent most adolescents from seeking these services. Many states have enacted laws that permit youth to waive guardian consent for HIV/STI services, but there is little research that explains the impact of these laws on adolescents’ decision to seek testing, treatment, and prevention services for HIV/STI.
Nelson says that the general lack of awareness among youth of minor consent laws, as well as the variation in these laws from state to state, contribute to the gap in HIV/STI medical service use among youth.
“Many youth don’t necessarily know about their right to self-consent, guardians don’t know about youths’ rights to consent, and it’s even possible that medical providers aren’t fully aware of all of the rules pertaining to these laws, because they are fairly complicated,” says Nelson. “This grant aims to understand these laws in more detail, as well as understand what youth know about these laws, how it affects their behavior, and how the laws should be adapted to effectively encourage HIV/STI service use among youth.”
Nelson says that several factors, including differences in political environments, explain the variations in minor consent laws among states in the US. All 50 states and Washington, DC allow most minors to consent for STI testing and treatment, but not necessarily HIV testing and treatment. The applicable age range for youth self-consent also varies in each state, and there are certain loopholes that allow physicians to disclose information to guardians, regardless of whether an adolescent elects to self-consent.
“You could be a youth in a state that allows you to test for HIV, but if you test positive, you need to tell a guardian about it in order to receive treatment,” says Nelson. She notes that the situation becomes even more complicated when youth are enrolled in their guardian’s health insurance plan. “If a youth uses their guardian’s insurance to receive testing or treatment, their guardian will receive an Explanation of Benefits that details those services, even if they live in a state where the youth can self-consent,” she says, adding that there are only a small number of states that prohibit this type of disclosure.
Nelson says this study may be one of her favorite projects that she has led, and she is looking forward to collaborating with the other members of the team.
“One of the most wonderful things about this project is how multidisciplinary it is,” she says. Her background is in both public health and clinical psychology, and the team also includes legal representatives from Columbia Law School, researchers from the Center for Innovative Public Health Research, and a youth advisory board comprised of adolescents from across the United States. “We’re bringing together public health, psychology, law, policy, and the youth perspective to make sure we have all of the right voices at the table,” she says.