Knowledge about and attitudes toward genetic screening among high-school students: the Tay-Sachs experience

High school students (ages 15 to 18 years; No. = 930) taking biology in their curriculum were surveyed (the first survey), in the classroom, for their knowledge and attitudes about Tay-Sachs disease and other "public" issues in genetics. High-school students now constitute 38.9% of those screened for the Tay-Sachs gene in the Montreal program and the participation rate is 75% among eligible Jewish students. Knowledge and attitudes about the screening experience were also surveyed (the second survey) in a sample (No. = 120) containing equal numbers of carriers and noncarriers matched for sex and age. The response rate was 75% in the second survey. The first survey revealed that the level of knowledge about Tay-Sachs disease is high among students, only 28% percent of whom were Jewish. Students have a very positive attitude toward genetic screening in general. These findings are associated with an effort to expand the human genetics content in the biology curriculum. The second survey revealed a favorable attitude toward the screening experience and the self-knowledge obtained among screened students. The screening clinic in the schools, and literature provided by the screening authority, was an effective source of knowledge about the significance of Tay-Sachs heterozygosity. Carriers experienced initial anxiety; later attitudes were similar in carrier and noncarriers. Self-image was unchanged in 90% and diminished in 10% of carriers and enhanced in 10% of noncarriers. Heterozygous students perceive information about their genetic status as useful to themselves and 95% want to know the gennotype of an intended spouse; 88.4% would marry a carrier and only 11.6% would "reconsider." These findings encourage us to emphasise high-school screening as the preferred program in our community and to offer it as an effective aid to the physician faced with increasing demands in medical genetics. It is also an effective model for teaching some genetics and human biology in the schools.