Tay Sachs disease carrier screening in schools: Educational alternatives and cheekbrush sampling

作者: Alexandra A Gason , Sylvia A Metcalfe , Martin B Delatycki , Vicki Petrou , Edith Sheffield

DOI: 10.1097/01.GIM.0000187162.28070.A7

关键词:

摘要: Purpose: Tay Sachs disease carrier screening programs have been offered successfully worldwide since 1970. The typically offer education, testing, and counseling to provide reproductive choices. One such program has Jewish school students in Melbourne 1998. In a time of increasing public awareness genetics, require continuous evaluation updating. Methods: Over 2 successive years, longitudinal involved attending schools Melbourne. Both qualitative quantitative techniques were used analyze alternative methods for education sampling procedures. Comparisons (1) computer-based resource versus an oral educational presentation (2) blood enzyme genetic testing cheekbrush alone. Results: session was effective significantly students' knowledge (10.5% ± 1.2%, P < .0001) decreasing their anxiety about being (−12.2% 1.6%, .0001). For the students, no significant differences found between presentation. There more accepting test lower when compared with offered. Conclusions: Computer-based instruction is equally effective, addition offering advantages self-paced learning minimization human resources as within program. Cheekbrush preferred should be implemented into current practices programs. These results present alternatives reflecting developing technology.

参考文章(40)
Robert A. Parker, John A. Phillips, Ellen Wright Clayton, Vickie L. Hannig, Jean P. Pfotenhauer, Preston W. Campbell, Lack of interest by nonpregnant couples in population-based cystic fibrosis carrier screening. American Journal of Human Genetics. ,vol. 58, pp. 617- 627 ,(1996)
McCabe L, EFFICACY OF A TARGETED GENETIC SCREENING PROGRAM FOR ADOLESCENTS American Journal of Human Genetics. ,vol. 59, pp. 762- 763 ,(1996)
R.L. Proia, E. Soravia, Organization of the gene encoding the human beta-hexosaminidase alpha-chain. Journal of Biological Chemistry. ,vol. 262, pp. 5677- 5681 ,(1987) , 10.1016/S0021-9258(18)45628-1
Neil A. Holtzman, Ruth R. Faden, Gary A. Chase, Karen J. Hofman, Gail Geller, Barbara A. Bernhardt, Ellen S. Tambor, Offering cystic fibrosis carrier screening to an HMO population: factors associated with utilization. American Journal of Human Genetics. ,vol. 55, pp. 626- 637 ,(1994)
Kaback Mm, Sonneborn M, Reynolds Lw, Zeiger Rs, Approaches to the control and prevention of Tay-Sachs disease. Progress in medical genetics. ,vol. 10, pp. 103- ,(1974)
C. R. Scriver, J. J. Mitchell, A. Capua, C. Clow, Twenty-year outcome analysis of genetic screening programs for Tay-Sachs and beta-thalassemia disease carriers in high schools. American Journal of Human Genetics. ,vol. 59, pp. 793- 798 ,(1996)
AA Gason, E Sheffield, A Bankier, MA Aitken, S Metcalfe, K Barlow Stewart, MB Delatycki, Evaluation of a Tay-Sachs disease screening program. Clinical Genetics. ,vol. 63, pp. 386- 392 ,(2003) , 10.1034/J.1399-0004.2003.00074.X
Kristine Barlow-Stewart, Leslie Burnett, Anné Proos, Viive Howell, Ferdous Huq, R Lazarus, Harry Aizenberg, A genetic screening programme for Tay-Sachs disease and cystic fibrosis for Australian Jewish high school students Journal of Medical Genetics. ,vol. 40, ,(2003) , 10.1136/JMG.40.4.E45