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Many Kids Not Fully Informed of Their Role in Cancer Studies
Date:3/30/2010

Parents usually call the shots; doctors unclear in their explanations, study finds

TUESDAY, March 30 (HealthDay News) -- Among children with cancer who are enrolled in clinical research trials, most do not receive a clear explanation of their role in research from their parents and doctors, a new report suggests.

In the study, U.S. researchers interviewed 37 childhood cancer patients, ages 7 to 18, and found that more than half of them did not know or recall that their cancer treatment was considered experimental or part of a research trial.

In a group of 22 children taking part in a clinical trial, 19 revealed that they did not understand their doctors' explanation of their role at the time they agreed to participate, the study authors reported in the March 29 online edition of the journal Pediatrics.

All the children in the study said they wanted to be involved in decision-making about their care and participation in research, according to the results of an interview and questionnaire.

"It was very enlightening to listen to the kids themselves talk," study leader Dr. Yoram Unguru, an associate faculty member at the Johns Hopkins Berman Institute of Bioethics, said in a news release. "For the vast majority, their parents were the ones who made decisions and decided what was going to happen."

Typically, doctors first talk to the parent or other adult decision-maker and then talk to the child. The degree of thoroughness through this process varies among doctors, Unguru said.

"Rather than going through the assent process as it was meant to be done, oftentimes the child signs a piece of paper, and all it represents is an empty signature. The child may not know what he or she is signing because the parents often just say, 'sign here,'" Unguru said.

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