Original article
Adolescents and genetic testing: what do they think about it?

Presented in part at the Annual meetings of the Society for Adolescent Medicine, Boston, Massachusetts, and the American Society for Human Genetics, Baltimore, Maryland, 2002.
https://doi.org/10.1016/S1054-139X(03)00135-6Get rights and content

Abstract

Purpose

To examine adolescents’ attitudes toward screening for hereditary disorders.

Methods

A survey was distributed among 672 students in grades 10 to 12 attending a public suburban high school. The first part of the survey consisted of information about three diseases: familial breast cancer, Tay-Sachs disease, and hypercholesterolemia. The second part was a questionnaire developed by the authors, which explored students’ attitudes toward testing for these diseases. Comparisons between and within groups were performed using X2 analysis.

Results

Out of the 672 surveys distributed, 361 were returned (54% response rate). Mean age of participants was 17 ± 1 years. Most girls (67%) wanted to be tested for familial breast cancer. Girls were significantly more willing than boys to be tested for Tay-Sachs disease (23% vs. 13%, p < .002) and for hypercholesterolemia (54% vs. 39%, p < .001). Girls who had a relative with breast cancer were significantly more willing to be tested than other girls (p < .05). Individuals in the ethnic risk groups for Tay-Sachs disease were significantly more willing to be tested than those not in the ethnic risk groups (p < .001). However, only 33% of those in the ethnic risk groups for Tay-Sachs disease stated that they would either “definitely” or “probably” wish to be tested. Students who had a family history of high cholesterol were significantly more willing to be tested than those without a family history (70% vs. 34%, p < .0001). About 81% of the students with a family history of high cholesterol had never been referred for cholesterol testing. Only about 25% of participants stated that their attitude toward genetic testing was affected by concerns that genetic information might be misused by insurance companies/employers.

Conclusions

The main motivator for genetic testing is having someone in the family affected by the disease in question. Adolescent girls are more willing to be tested for genetic diseases than are boys.

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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