By Tom Stoelker
Center for Ethics Education Director Celia B. Fisher, Ph.D., and Brian Mustanski, Ph.D., of Northwestern University, have received a $1.9 million grant to study ethical issues in HIV-prevention research for lesbian, gay, bisexual, and transgender (LGBT) youth under 18.
The four-year grant is the first awarded by the National Institute on Minority Health Disparities (NIMHD) for LGBT issues, said Fisher.
Despite the fact that LGBT youth have the highest risks of HIV infection among teens, there are few studies about HIV prevention for this demographic, said Fisher, the Marie Ward Doty Endowed University Chair and professor of psychology. The obstacles that researchers face are many—not the least of which is that kids coming to terms with their identity do so in a hostile environment.
“One of the issues that researchers have to grapple with is that the teens’ parents are often unaware their kids are gay,” she said. “Some of these kids will not want to participate because asking their parents for permission could result in harm, including getting kicked out of the house. But without their involvement in research there’s not enough guidance out there for services that could reduce HIV.”
LGBT youth also have high rates of suicide and substance abuse, as well as a high risk of getting other sexually transmitted diseases. Despite these known dangers, Fisher said, researchers remain mired in an “ethical double bind.”
“There is a need for this type of research, but investigators must find ways to adequately protect kids from making participation choices that may not be in their best interest, especially [if]parental permission may result in harm,” said Fisher. Under federal law, researchers working with minors are permitted to waive parental permission only if the research is of minimal risk and if adequate alternative protections are in place, said Fisher.
In cooperation with LGBTQ advocacy groups, the research team will place ads for the study on websites of interest to LGBT teens. To ensure that their methods and questions protect LGBT rights and welfare, the researchers will also receive guidance from advisory boards that include science and ethics experts, LGBT youth, and parents.
Any minors interested in participating in the study will be able to inquire via email. Trained staff will then call them back to make sure they understand and agree to the consent information. In addition, monitors will maintain the site on which youth can post comments and will delete any inappropriate material before it is seen by other teens.
The goal of the project is to help inform research ethics policies and practices by learning more about how LGBT youth view the risks and benefits of the research and of parental permission. It will also document whether minors are capable of providing their own informed consent.
By better understanding real-world risks and benefits to LGBT youth of taking part in research, Fisher and her colleagues hope to both reduce barriers to and increase protections for the youths’ participation in HIV-prevention research,
“The point is to pave the way for research that helps these kids to get the HIV-prevention services they need and to inform federal, state, and local governments as to what their policies should be,” said Fisher.
