Ethics and Research with Children: A Case-Based Approach

By Eric Kodish | Go to book overview

11
The Ethics of Predictive Genetic Testing in Prevention Trials Involving Adolescents

Gail Geller


CASE DESCRIPTION

You are an institutional review board (IRB) member at an academic medical center known for its advances in genetic research. You are asked to review two prevention protocols in which at-risk children/adolescents between the ages of 10 and 17 undergo predictive genetic testing.

One protocol focuses on minors with a family history of familial adenomatous polyposis of the colon (FAP), ascertained through their affected or at-risk parent. All adult patients at the cancer prevention clinic who are found to carry the riskconferring APC (adenomatous polyposis coli) mutations would be invited to enroll their children in the study. Participants would first undergo APC testing (on a saliva sample) and learn their results. Then all mutation carriers would be assigned to a chemopreventive intervention with a drug that has been shown to reduce the risk of FAP in adults. The purpose of this study would be to determine if the risk:benefit ratio of the drug is as favorable in adolescents as it is in adults, and to assess the impact of the genotype information itself on the adolescents' psychological health and compliance with risk-reducing regimens.

The second protocol focuses on adolescents in the general population who might have an increased susceptibility to smoking-related behaviors (e.g., initiating, continuing, quitting smoking) and nicotine addiction. This protocol involves community-based recruitment strategies such as distributing leaflets in middle and high schools or posting advertisements in newspapers. Adolescents would be recruited before they start to smoke, and their saliva would be tested for genetic polymorphisms that increase their risk of initiating smoking and becoming addicted to nicotine. They would be told their test results and then participate in an intensive smoking prevention program. The purpose of the research would be to see if the genotype information, itself, has an impact on their compliance with and the success of the intervention. You realize that there

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