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

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.