Original articleAdolescents and genetic testing: what do they think about it?
Section snippets
Subjects and procedures
Students in grades 10 to 12 attending a suburban public high school in Barrington, Rhode Island, were invited to participate in an anonymous survey regarding testing for hereditary disorders. A letter was sent to parents or guardians informing them about the proposed survey and requesting that they notify the school if they did not consent to their child’s participation. The first part of the survey consisted of information about three diseases: familial breast cancer, Tay-Sachs disease, and
Participants’ characteristics
The survey was distributed among 672 students in grades 10 to 12 during an extended homeroom period. No parents objected to their children’s participation. Out of the 672 surveys distributed, 361 were returned (54% response rate). Mean age of participants was 17 ± 1 years, with 181 girls and 180 boys. About 39% of female participants had a relative who had been diagnosed with breast cancer, and 15% considered themselves in an ethnic risk group for developing breast cancer. Thirteen percent of
Discussion
The present study indicates that many adolescents are interested in testing for possible hereditary disorders, with girls more willing to be tested for genetic diseases than boys. The main motivator for genetic testing is having someone in the family affected by the disease in question.
About two-thirds of adolescent girls in the present study wished to undergo genetic testing to detect inherited susceptibility to breast cancer. A study in adults showed a higher rate of BRCA1 testing in women
Limitations
The present study has some limitations. Although we asked whether participants considered themselves in risk groups for breast cancer, Tay-Sachs disease, or hypercholesterolemia, we did not specifically ask about their ethnicity. In addition to ethnicity, it would also be important to ask in future studies about other demographic characteristics, such as socioeconomic background and insurance coverage of study participants. Another limitation of the study is that individuals who considered
Acknowledgements
The authors thank the Barrington High School students and the school administration for their help in conducting this study.
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