Increasingly, IRBs are seeing researchers recruiting adolescent participants through social media, according to Rachel Reynolds, MPH, senior IRB analyst for social and behavioral research at Northwestern University.
Researchers have evaluated study protocols for privacy concerns, transparency on the part of the investigator, and terms of services (e.g., whether an online forum is private vs. public). “One ethical concern we’ve seen a lot lately is when participants share comments on a recruitment post,” Reynolds says.
Some posts make false claims of efficacy (e.g., participating in the trial cured a medical condition). “Participants — adolescents, particularly — shouldn’t be taking part in the recruitment process,” Reynolds cautions. IRBs expect investigators to follow a process to monitor comments regularly and turn off comments and/or prevent sharing of posts if it becomes necessary during the study.
Parental consent for online recruitment of teens is another problem. Investigators must consider consent carefully. “Challenges related to consent are often the most difficult for researchers to address online,” Reynolds explains. “But there really has to be a method of parental permission, even with online studies.”
Consent can be handled verbally, but some researchers email parents the permission form. After sending the form, the child is cleared to assent and complete the survey. Recently, a PI surveying adolescents asked for a waiver of parental permission after arguing the process was too time-consuming. The IRB did not grant the waiver. “We did not feel it was too difficult because we have seen other researchers do it,” Reynolds says.
If researchers want to waive parental consent, there has to be a valid reason. Investigators reviewed a recent study involving LGBTQ+ youth participating in online focus groups. The researchers requested a waiver of parental permission, which was granted. Everyone agreed the study posed some unique risks for participants. “The investigators had done research with the LGBTQ+ population before, and knew not all the participants had come out to their parents,” Reynolds explains.
There is no hard-and-fast rule when it comes to waiving parental permission. “We are happy to help investigators if questions do arise,” Reynolds offers.
Reynolds suggests that when recruiting adolescents online, investigators think about how they would proceed if recruitment was conducted in person. For instance, recruitment ads posted on a bulletin board raise the same issues as ads posted on websites. “The recruitment method and materials cannot create undue influence. Also, recruitment language cannot contain misleading statements or exculpatory language,” Reynolds notes.
Likewise, researchers would not be able to barge into an in-person group meeting without an invitation, just as they cannot post in a private Facebook group without the moderator’s permission. “As the online world is changing, we have to adapt with it and look at all the ethical considerations,” Reynolds says.
Guardian permission is a significant barrier to adolescent involvement in sexual health research, according to Celia B. Fisher, PhD, director of Fordham University’s Center for Ethics Education. Thus, the minority of adolescent girls who are willing to participate in studies requiring guardian permission are not representative of the larger population. “This skews study findings in ways that can lead to poorly conceived interventions by healthcare providers,” Fisher laments.
This issue arose during the design of research looking to understand associations between sexting behaviors and risks to mental and sexual health among adolescent girls.1 “We found there is a paucity of studies on the consequences of sexting among younger adolescents,” Fisher reports.
Typically, IRBs determine such research requires guardian permission, based on the assumption that answering such questions may cause teens to experience worse discomfort than what they deal with in everyday life.
In another study, the authors sought data to inform future IRB decision-making regarding guardian consent.2 Girls’ comfort with sexting research participation was compared to their attitudes toward sharing such information with doctors, parents, and teachers in everyday life and during routine medical examinations. “We were surprised to find that adolescent girls were more comfortable reporting on their sexting and sexual behaviors in anonymous online surveys than discussing such topics with their parents, practitioners, and teachers,” says Xiangyu Tao, MA, the study’s lead author and a doctoral student in the Fordham University Applied Developmental Psychology program.
IRBs have been reluctant to waive guardian permission for sexual health-related research based in part on the opposite assumption, that it presents a greater probability of discomfort than girls might experience during routine medical exams or in everyday life. “Our findings suggest that anonymous online sexting studies can be classified as minimal risk for adolescent girls and provide empirical support for IRB decisions to waive guardian permission for participation in such studies,” Tao says.
- Bragard E, Fisher CB. Sexual subjectivity, peer pressure, and partner coercion on perceived sexting consequences among adolescent girls. 2020 Global Sex Research Virtual Conference. Nov. 6-9, 2020.
- Tao X, Bragard E, Fisher CB. Risks and benefits of adolescent girls’ participation in online sexting survey research.