High school Tay-Sachs disease carrier screening: 5 To 11-year follow-up

Journal of Community Genetics

Volumn 5, Issue 2, 2014, Pages 139-146

  Curd, Helen ^a,b,c   Lewis, Sharon ^a   Macciocca, Ivan ^a,c   Sahhar, Margaret ^a,c   Petrou, Vicki ^c,d   Bankier, Agnes ^e   Lieberman, Sari ^f   Levy Lahad, Ephrat ^f   Delatycki, Martin B ^a,b,e  

^a MURDOCH CHILDREN'S RESEARCH INSTITUTE   (Australia)

^b UNIVERSITY OF MELBOURNE   (Australia)

^c Genetic Health Services Victoria   (Australia)

^d Royal Australian and New Zealand College of Obstetrics and Gynaecology   (Australia)

^e AUSTIN HEALTH   (Australia)

^f SHAARE ZEDEK MEDICAL CENTER   (Israel)

Author keywords

Adolescent; Carrier screening; High school; Psychological impact

Indexed keywords

ADULT; ANXIETY; ARTICLE; ASHKENAZI JEWISH; ATTITUDE TO ILLNESS; AUSTRALIA; BIOLOGICAL PHENOMENA AND FUNCTIONS CONCERNING THE ENTIRE ORGANISM; CHILD; CLINICAL ARTICLE; COMPARATIVE STUDY; CONTROLLED STUDY; DECISION REGRET SCALE; FOLLOW UP; GENETIC SCREENING; HETEROZYGOTE; HIGH SCHOOL; HUMAN; JEW; MEMORY; NAMED INVENTORIES, QUESTIONNAIRES AND RATING SCALES; OUTCOME ASSESSMENT; PATIENT ATTITUDE; PATIENT EDUCATION; PATIENT SATISFACTION; PRIORITY JOURNAL; PSYCHOLOGICAL IMPACT; QUESTIONNAIRE; RETROSPECTIVE STUDY; STATE TRAIT ANXIETY INVENTORY; TAY SACHS DISEASE;

EID: 84899054087     PISSN: 1868310X     EISSN: 18686001     Source Type: Journal    
DOI: 10.1007/s12687-013-0163-z     Document Type: Article

References (22)

1. Ayme S, Bobrow M, Coviello D, Evers-Kiebooms G, Farndon P, Kaariainen H, Tranebjaerg L (2000) Population genetic screening programmes: proposed recommendations of the European Society of Human Genetics. Eur J Hum Genet 8:998-1000
2. Bach G, Tomczak J, Risch N, Ekstein J (2001) Tay-Sachs screening in the Jewish Ashkenazi population: DNA testing is the preferred procedure. Am J Med Genet 99:70-75 (Pubitemid 32121589)
3. Barlow-Stewart K, Brunett L, Proos A, Howell V, Huq F, Lazarus R, Aizenberg H (2003) A genetic screening programme for Tay-Sachs disease and cystic fibrosis for Australian Jewish high school students. J Med Genet 40:e45
4. Brehaut JC, O'Connor AM, Wood TJ, Hack TF, Siminoff L, Gordon E, Feldman-Stewart D (2003) Validation of a decision regret scale. Med Decis Making 23:281-292 (Pubitemid 36899094)
5. Childs B, Gordis L, Kaback M, Kazazian HH (1976) Tay- Sachs screening-motives for participating and knowledge of genetics and probability. Am J Hum Genet 28:537-549 (Pubitemid 8008373)
6. Clow CL, Scriver CR (1977) Knowledge about and attitudes toward genetic screening among high school students-Tay-Sachs experience. Pediatr 59:86-91 (Pubitemid 8022186)
7. Delatycki MB (2008) Population screening for reproductive risk for single gene disorders in Australia: now and the future. Twin Res Hum Genet 11:422-430
8. Desnick RJ, Kaback MM (2001) Future perspectives for Tay-Sachs disease. Adv Genet 44:349-356
9. Frumkin A, Zlotogora J (2008) Genetic screening for reproductive purposes at school: is it a good strategy? Am J Med Genet A 146A:264-269
10. Gason AA, Sheffield E, Bankier A, Aiken MA, Metcalfe S, Stewart KB, Delatycki MB (2003) Evaluation of a Tay-Sachs disease screening program. Clin Genet 63:386-392 (Pubitemid 36966021)
11. Horowitz M, Wilner N, Alvarez W (1979) Impact of Event Scale-measure of subjective stress. Psychosom Med 41:209-218 (Pubitemid 9219271)
12. Ioannou L, Massie J, Lewis S, Petrou V, Gason A, Metcalfe S, Delatycki MB (2010) Evaluation of a multi-disease carrier screening programme in Ashkenazi Jewish high schools. Clin Genet 78:21-31
13. Kaback MM (2000) Population-based genetic screening for reproductive counseling: the Tay-Sachs diseasemodel. Eur J Pediatr 159:S192-S195
14. Kaback MM, Zeiger RS, Reynolds LW, Sonnebor M (1974) Approaches to control and prevention of Tay-Sachs disease. Prog Med Genet 10:103-134
15. Marteau T, Bekker H (1992) The development of a six-item short-form of the state scale of the Spielberger State-Trait Anxiety Inventory (STAI). Br J Clin Psychol 31:301-306
16. Marteau TM, Vanduijn M, Ellis I (1992) Effects of genetic screening on perceptions of health-a pilot study. J Med Genet 29:24-26
17. Michie S, McDonald V, Bobrow M, McKeown C, Marteau T (1996) Parents' responses to predictive genetic testing in their children: report of a single case study. J Med Genetics 33:313-318 (Pubitemid 26102459)
18. Mitchell JJ, Capua A, Clow CL, Scriver CR (1996) Twenty-year outcome analysis of genetic screening programs for Tay-Sachs and beta-thalassemia disease carriers in high schools. Am J Hum Genet 59:793-798 (Pubitemid 26328074)
19. Ross LF (2006) Heterozygote carrier testing in high schools abroad: what are the lessons for the US? J Law Med Ethics 34:753-764
20. Resta R, Biesecker B, Bennett R, Blum S, Hahn S, Strecker M, Williams J (2006) A new definition of genetic counseling: National Society of Genetic Counselors' Task Force report. J Genet Couns 15:77-88
21. Smith CO, Lipe HP, Bird TD (2004) Impact of presymptomatic genetic testing for hereditary ataxia and neuromuscular disorders. Arch Neurol 61:875-880 (Pubitemid 38747326)
22. Zeesman S, Clow CL, Cartier L, Scriver CR (1984) A private view of heterozygosity-8-year follow-up-study on carriers of the Tay-Sachs gene detected by high-school screening in Montreal. Am J Med Genet 18:769-778 (Pubitemid 14075005)