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

Journal of Genetic Counseling
(Published online on 09 Feb 2006)

Authors:
G. Hegwer (1), C. Fairley (2, 3), J. Charrow (2, 3) and K. E. Ormond (1, 4, 5)

Author Affiliations:

(1) Center for Genetic Medicine and Graduate Program in Genetic Counseling, Feinberg School of Medicine, Northwestern University, Chicago, Illinois, U.S.

(2) Department of Pediatrics and Division of Genetics, Feinberg School of Medicine, Children's Memorial Hospital of Chicago, Chicago, Illinois, U.S.

(3) The Chicago Center for Jewish Genetic Disorders, Chicago, Illinois, U.S.

(4) Department of Medicine, Feinberg School of Medicine, Northwestern University, Chicago, Illinois, U.S.

(5) 676 N. St. Clair #1280, Chicago, Illinois, 60611, U.S.

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.

Author Contact:
K. E. Ormond
Email: k-ormond@northwestern.edu

(C) Journal of Genetic Counseling

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