How consent requirements may shape teen mental health research

(Reuters Health) - - Requiring teens to get permission from their parents to participate in studies about behavioral health may make it harder to understand adolescent psychology - especially when drugs and alcohol are involved - a U.S. study suggests.

That’s because teens are less likely to complete surveys if they have to seek permission to answer questions about risky or illegal behaviors, the study found. Plus, these studies may not include enough older adolescents, boys or black youth to accurately reflect what’s happening in these populations.

“Requiring parental consent may introduce a systematic bias that excludes certain segments of our population,” said lead study author Chao Liu of Oklahoma State University in Stillwater.

“If this is the case, then the treatments and prevention interventions developed may not adequately address the needs of these populations,” Liu said by email.

In the U.S., minors under age 18 generally need permission from their parents to get medical treatment or participate in research, researchers note in the Journal of Adolescent Health.

When it comes to research, consent may be “active,” requiring parents to explicitly give their permission for kids to join studies or it may be “passive,” allowing youth to participate unless parents opt out. As a rule, studies involving patient care use active consent, but some survey research uses passive consent.

Liu and colleagues examined data from 15 previously published studies with a total of 104,074 children to see how the consent policies influenced which kids participated and how they responded to questions about risky or illegal behaviors.

With active consent, females and younger youth were more likely to participate than males or older teens, the study found. White children were also more likely to join these studies than Hispanic youth, but this difference was too small to rule out the possibility that it was due to chance.

Black teens were more likely to join studies with passive consent than active consent, the study also found.

With passive consent, teens were much more likely to report using drugs or alcohol than with active consent.

“Teens may not want their parent to know about behaviors, specifically risky behaviors, for fear of getting in trouble,” said Dr. Jill Beck, a researcher at the University of Nebraska Medical Center in Omaha who wasn’t involved in the study.

“Requiring parental consent may influence some teens to either not participate in a study at all or give false information,” Beck said by email.

One limitation of the analysis is that it included too few studies to make broad conclusions about how about how the type of consent influences who participates or what participants say, the authors note. It’s also possible the findings would be different outside the U.S. where laws on parental consent for research might differ.

“The question is whether adolescents must be viewed as a vulnerable subgroup for whom parental consent is necessary to ensure appropriate protection, or whether requiring this additional layer of consent actually robs adolescents of opportunities to contribute to research as participants in certain circumstances,” Dr. Reshma Jagsi, an ethics researcher at the University of Michigan in Ann Arbor who wasn’t involved in the study, said by email.

The answer is complicated, and age alone isn’t a very good way of determining whether teens have the capacity to make informed decisions about participating in research, said Dr. Yoram Unguru of the Johns Hopkins Berman Institute of Bioethics in Baltimore.

“Healthy, older children who lack experience with medical decision-making or whose parents have insulated them from making certain life decisions may have decreased capacity,” Unguru, who wasn’t involved in the study, said by email.

“Younger children with chronic illness or poor health with all its experiences and choices or whose parents have allowed them to make life decisions may have been challenged to develop increased capacity and may be better equipped to appreciate that their choices carry certain consequences and may, therefore have greater understanding of participating in medical and research decisions than an older healthy child,” Unguru added.

SOURCE: Journal of Adolescent Health, online March 28, 2017.