High schoolers learn about protections

Gaining experience with review boards

As high school students get exposed to more sophisticated science and health programs, some are also having their first encounters with human subjects protection issues.

In science fair projects, in special science and health schools, and through outreach programs from research institutions, they're doing social and behavioral studies and being taken on to help established scientists with medical research.

While the number is not necessarily large, observers say aspiring investigators are interacting with review boards.

Rebecca Dahl, PhD, CIP, manager of the human subjects protection program at Children's Hospital, Los Angeles, was approached about allowing a high school student who was participating in a summer research program to be added to a protocol. "They wanted to have the student assist them," Dahl says. "And people were wondering what to do and how to go about the proper process."

Dahl says that she would be cautious about what type of assistance a high school student would be able to provide. "I would have to determine if what the student is doing is really at the level of knowledge and understanding so that they can perform things where they can feel successful," she says.

Those tasks might include interaction with subjects, such as handing out surveys or answering simple questions, as long as they were closely supervised by an investigator. And Dahl says they would require the same type of training required of older research staff." But remember, most of these kids, although they're screened very carefully to even be involved in the summer programs, they're not screened for research knowledge, and they don't get that, necessarily, in the high schools."

High school research ethics

At some specialty high schools, however, human research ethics is part of the curriculum.

Judith Scheppler, PhD, is coordinator of student inquiry and research for the Illinois Mathematics and Science Academy (IMSA) in Aurora, IL. Scheppler's students conduct their own research projects, as well as working off-site with established researchers at area institutions such as the University of Chicago, Northwestern University, and Fermilab.

The school requires that students working off-site be written into investigators' review boards proposals and that the school receive a copy of the outside review boards approval letter. "We don't want our kids to be used in the wrong way to do data collection," Schepplersays. "And we also use it as an educational tool for our students. By getting that [approval], we hope that they understand that you can't just go out and do research with human subjects without oversight."

IMSA also has its own review board, chaired by Scheppler, in part to deal with student-generated research It also fields requests from adult investigators wishing to recruit IMSA students for studies. Although the school does not handle federally funded research, Scheppler says the board's policies require that it follow federal guidelines.

"If your students are doing research, one can make the case that they are doing it as an educational endeavor and, therefore, they don't actually need review board approval," Scheppler says. "But for a number of students, it really becomes a gray area. I will have some of my students present at places such as the Illinois Gifted Conference. At that point, they are subject to review board guidelines, because they are participating in a public venue, contributing to generalizable knowledge."

Scheppler says that about five years ago, the school added a core course for sophomores called "Methods of Scientific Inquiry," part of which deals with human subjects protection issues.

When students submit research proposals, they must provide an ethical overview of their research, and, if it involves humans, must detail how they plan to handle such questions as voluntary participation, confidentiality, and informed consent.

Some of Scheppler's students have conducted observational research in classrooms at other schools and have quizzed students to gauge the effectiveness of different teaching styles. "We're really not going to do anything that's more than minimal risk, because our students just aren't skilled enough to take on anything more than that," she says. "And we're dealing with, at least on the campus, non-biomedical research."

However, she says students have studied topics such as teasing, where there was some concern about psychological risk. "What we do is make sure they're working with one of the counselors when they do those surveys, so the counselors are aware if any student becomes stressed because of the nature of the questions," Scheppler says.