An HIV crisis among LGBT adolescents in the U.S. is blooming, but the research that could help us understand and solve this crisis is stalled.
HIV has moved from being a death sentence to being a chronic disease. In the world, more people are receiving treatment and fewer are dying of AIDS. While this is wonderful news, it has also masked the inequity that this disease is still ravaging certain sectors of our population at alarming rates.
{mosads}As with other health disparities, the brunt of the epidemic is borne disproportionately by marginalized populations. While overall infections are declining, in 2014 young gay and bisexual men accounted for over 80 percent of new HIV diagnoses among youth alone, with youth of color most severely affected.
We need research that illuminates the causes of this epidemic among young people, and develops and tests HIV prevention and treatment tools that are specific to LGBT adolescents. Prevention strategies that work with other populations (heterosexuals, adults, etc.) do not necessarily work with LGBT adolescents. We need targeted research.
As communities across the U.S. and globally prepare to celebrate World AIDS Day on Dec. 1, we must recommit to HIV prevention research that targets all affected populations — and especially the ones most at risk. And we must eliminate barriers to that research.
In many countries, research must be approved by Institutional Review Boards (IRBs) whose role is to protect the research participants from harm. For example, if someone wants to study the effects of a new drug by testing it on study participants, the IRB will ensure that fundamental ethical standards are upheld.
These standards are admirable: the benefit to humanity must be greater than the real or potential harm to the study participants; the participants must understand the risks and benefits of the research and must be able to consent; participants must be selected in a fair and equitable manner, and costs and benefits of the research must be distributed fairly and equally to all potential participants.
But an overly cautious application of these principles can also prevent research from happening and indirectly cause harm.
IRBs are a significant obstacle to HIV research on LGBT youth, resulting in the underrepresentation of these youth in research. Many IRBs will not approve HIV prevention research with LGBT adolescents — especially when the study does not require their parents’ consent.
But requiring parental consent for LGBT youth’s participation in HIV prevention research inevitably precludes the participation of teens who are not out to their parents or who won’t — or can’t — discuss HIV with their parents.
IRBs also tend to underestimate the ability of LGBT teens to self-consent to participation in research. These are judgment calls and assumptions on the part of the IRB — they are not based on data — and this is problematic. IRBs must use scientific evidence and not opinion when determining the risks of adolescent participation in sexual health and HIV research.
Studies already exist that provide this scientific evidence. A 2015 study at Northwestern and Fordham universities asked LGBT youth about sexual health survey research. Contrary to the prevailing IRB objections, the youth in the study overwhelmingly expressed the desire to participate in sexual health research, and claimed that the benefits to themselves and the LGBT community far outweigh the risks.
As long as they have a sense of autonomy over the research process, there is transparency about the study, and there is trust in the researchers, youth are ready, willing, and able to participate. However, the study found, they will not participate if they have to obtain their parent’s permission.
A 2016 study of the Northwestern Institute for Sexual and Gender Minority Health and Wellbeing found that even parents think that parental permission should not be required for LGBT teens’ participation in research.
There is a need for greater representation of LGBT adolescents in HIV research, research that can prevent the spread of HIV and improve health and well being for LGBT youth. It is imperative to give LGBT adolescents a voice in decisions about their involvement in HIV research.
IRB decisions need to be guided by data, and not by assumptions about a population’s vulnerability and inability to self-consent. IRBs considering HIV research among LGBT youth need to consider the emerging scholarship on this issue and allow LGBT teens’ participation in research about their lives, without requiring parental consent. That could have a dramatic impact on the HIV epidemic among adolescents in our country.
As long as HIV prevention research isn’t happening, LGBT teenagers will continue to become infected with HIV.
Francesca Gaiba, PhD, is Research Associate Professor of Medical Social Sciences and Associate Director of the Institute for Sexual and Gender Minority Health and Wellbeing at Northwestern University and a Public Voices Fellow through The OpEd Project.
The views expressed by contributors are their own and not the views of The Hill.