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01-02-2006 | Original Paper

Knowledge and Attitudes Toward a Free Education and Ashkenazi Jewish Carrier Testing Program

Authors: G. Hegwer, C. Fairley, J. Charrow, K. E. Ormond

Published in: Journal of Genetic Counseling | Issue 1/2006

Abstract

Carrier testing is offered on the basis of Ashkenazi Jewish background in both the prenatal and preconception settings, with the goal of decreasing the prevalence of affected individuals and allowing informed decision-making during childbearing. The purpose of this study was to (1) document the demographic characteristics of individuals who attended a free education and screening program, (2) learn how the education program changed attendees' knowledge and attitudes by learning more about these disorders, and (3) determine how participants perceived their carrier status risk. One hundred seventy-four individuals completed questionnaires at the beginning and end of an educational program about the Ashkenazi Jewish genetic disorders. There was a statistically significant difference in the participant's level of knowledge from the pre- to post education (p < .001). Females reported a significantly higher level of concern about the disorders (p = .004) and their carrier status (p = .006) before the education, as well as about their carrier status post education (p = .05). Finally, having one or more parent affiliated with Orthodox Judaism was related to higher knowledge before the education program (p = .05). In conclusion, this study demonstrated that an educational carrier screening program increased knowledge about the disorders and also produced mild anxiety regarding personal and reproductive risks.

Axworthy, D., Brock, D. J. H., Bobrow, M., & Marteau, T. M. (1996). Psychological impact of population-based carrier testing for cystic fibrosis: 3-year follow-up. Lancet, 347, 1443–1446.CrossRefPubMed

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.CrossRefPubMed

Childs, B., Gordis, L., Karback, M. M., & Kazazian, H. H. (1976). Tay-Sachs screening: Social and psychological impact. Am J Hum Genet, 28, 550–558.PubMed

Clark, J. T. R. (1978). Screening for carriers of Tay-Sachs disease: Two approaches. CMA, 119, 549–550.

Clayton, E. W., Hannig, V. L., Pfotenhauer, J. P., Parker, R. A., Campbell, P. W. III., & Phillips, J. A. III (1996). Lack of interest by non-pregnant couples in population-based cystic fibrosis carrier screening. Am J Hum Genet, 58, 617–627.PubMed

Clow, C. L., & Scriver, C. R. (1977). Knowledge about and attitudes toward genetic screening among high-school students: The Tay Sachs experience. Pediatrics, 59(1), 86–91.PubMed

Denayer, L., Welkenhuysen, M., Evers-Kiebooms, G., Casiman, J. J., & vandenBerghe, H. (1997). Risk perception after CF carrier testing and impact of the test result on reproductive decision-making. Am J Med Genet, 69, 422–428.CrossRefPubMed

D'Souza, G., McCann, C. L., Hedrick, J., Fairley, C., Nagel, H. L., Kushner, J. D., et al. (2000). Tay-Sachs disease carrier screening: A 21 year experience. Genet Test, 4(3), 257–263.CrossRefPubMed

Eng, C. M., & Desnick, R. J. (2001). Experiences in molecular-based prenatal screening for Ashkenazi Jewish genetic diseases. In C. R. Scriver (Ed.), Advances in genetics (Vol. 44 pp 275–295).

Eng, C. M., Schechter, C., Rabinowitz, J., Fulop, G., Burget, T., Levy, B., et al. (1997). Prenatal genetic carrier screening: Experience with triple disease screening in the Ashkenazi Jewish population. J Am Med Assoc, 278, 1268–1272.CrossRef

Garber, A. P., Platt, L. D., Wang, S., Jam, K., Carlson, D. E., & Rotter, J. I. (1993). Determinants of utilization of Tay-Sachs screening. Obstet Gynecol, 82, 460–463.PubMed

Gason, A. A., Sheffield, E., Bankier, A., Aitken, M. A., Metcalfe, S., Barlow Stewart, K., et al. (2003). Evaluation of a Tay-Sachs disease screening program. Clin Genet, 63(5), 386–392.CrossRefPubMed

Goodman, M. J., & Goodman, L. E. (1982). The overselling of genetic anxiety. Hastings Cent Rep, 20–27.

Hechtman, P., & Kaplan, F. (1993). Tay-Sachs disease screening and diagnosis: Evolving technologies. DNA Cell Biol, 12(8), 651–665.PubMed

Henneman, L., Bramsen, I., van der Ploeg, H. M., Ader, H. J., van der Horst, H. E., Gille, J. J. P., et al. (2001). Participation in preconception carrier couple screening: Characteristics, attitudes, and knowledge of both partners. J Med Genet, 38, 695–703.CrossRefPubMed

Kaback, M., Lim-Steele, J., Dabholkar, D., Brown, D., Levy, N., & Zeiger, K. (1993). Tay-Sachs disease-carrier screening, prenatal diagnosis, and the molecular era. An international perspective, 1970–1993. JAMA, 270, 2307–2315.CrossRefPubMed

Levin, M. (1999). Screening Jews and genes: A consideration of the ethics of genetic screening within the Jewish community: Challenges and responses. Genet Test, 3(2), 207–213.PubMed

Marteau, T. M. (1992). Psychological implications of genetic screening. March Dimes Birth Defects Found Orig Artic Ser, 28(1), 185–190.

McCabe, L. (1996). Efficacy of a targeted genetic screening program for adolescents. Am J Hum Genet, 59, 762–763.PubMed

Mitchell, J. J., Capua, A., Clow, C., & Scriver, C. R. (1996). Twenty-year outcome analysis of genetic screening programs for Tay-Sachs and β-Thalassemia disease carriers in high schools. Am J Hum Genet, 59(4), 793–798.PubMed

Motulsky, A. G. (1995). Jewish diseases and origins. Nat Genet, 99(2), 99–101.CrossRef

Phillips, J. A. III (2000). Perceptions of Ashkenazi Jewish breast cancer patients on genetic testing for mutations in BRCA1 and BRCA2. Clin Genet, 57(5), 376–383.CrossRefPubMed

Rosner, F. (1991). Screening for Tay-Sachs disease: A note of caution. J Clin Ethics, 2(4), 251–252.PubMed

Shapiro, D. A., & Shapiro, L. R. (1989). Pitfalls in Tay-Sachs carrier detection: Physician referral patterns and patient ignorance. NY State J Med, 89, 317–319.

Strom, C. M., Crossley, B., Redman, J. B., Quan, F., Buller, A., McGinniss, M. J., et al. (2004). Molecular screening for diseases frequent in Ashkenazi Jews: Lessons learned from more than 100,000 tests performed in a commercial laboratory. Genet Med, 6, 145–152.PubMedCrossRef

Tercyak, K. P., Johnson, S. B., Roberts, S. F., & Cruz, A. C. (2001). Psychological response to prenatal genetic counseling and amniocentesis. Patient Educ Couns, 43(1), 73–84.CrossRefPubMed

Witte, K. (1992). Putting the fear back into fear appeals: The extended parallel process model. Commun Monogr, 59, 329–349.

Witte, K. (1994). Fear control and danger control: A test of the extended parallel process model. Commun Monogr, 61, 113–134.CrossRef

Title: Knowledge and Attitudes Toward a Free Education and Ashkenazi Jewish Carrier Testing Program
Authors: G. Hegwer
C. Fairley
J. Charrow
K. E. Ormond
Publication date: 01-02-2006
Publisher: Springer US
Published in: Journal of Genetic Counseling / Issue 1/2006
Print ISSN: 1059-7700
Electronic ISSN: 1573-3599
DOI: https://doi.org/10.1007/s10897-005-9004-5

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