Literature DB >> 16468087

Knowledge and attitudes toward a free education and Ashkenazi Jewish carrier testing program.

G Hegwer1, C Fairley, J Charrow, K E Ormond.   

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.

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Year:  2006        PMID: 16468087     DOI: 10.1007/s10897-005-9004-5

Source DB:  PubMed          Journal:  J Genet Couns        ISSN: 1059-7700            Impact factor:   2.717


  26 in total

1.  Participation in preconceptional carrier couple screening: characteristics, attitudes, and knowledge of both partners.

Authors:  L Henneman; I Bramsen; H M van der Ploeg; H J Adèr; H E van der Horst; J J Gille; L P ten Kate
Journal:  J Med Genet       Date:  2001-10       Impact factor: 6.318

2.  Psychological response to prenatal genetic counseling and amniocentesis.

Authors:  K P Tercyak; S B Johnson; S F Roberts; A C Cruz
Journal:  Patient Educ Couns       Date:  2001-04

3.  Perceptions of Ashkenazi Jewish breast cancer patients on genetic testing for mutations in BRCA1 and BRCA2.

Authors:  K A Phillips; E Warner; W S Meschino; J Hunter; M Abdolell; G Glendon; I L Andrulis; P J Goodwin
Journal:  Clin Genet       Date:  2000-05       Impact factor: 4.438

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Authors:  A G Motulsky
Journal:  Nat Genet       Date:  1995-02       Impact factor: 38.330

5.  Tay-Sachs disease carrier screening: a 21-year experience.

Authors:  G D'Souza; C L McCann; J Hedrick; C Fairley; H L Nagel; J D Kushner; R Kessel
Journal:  Genet Test       Date:  2000

6.  Tay-Sachs screening in the Jewish Ashkenazi population: DNA testing is the preferred procedure.

Authors:  G Bach; J Tomczak; N Risch; J Ekstein
Journal:  Am J Med Genet       Date:  2001-02-15

7.  Twenty-year outcome analysis of genetic screening programs for Tay-Sachs and beta-thalassemia disease carriers in high schools.

Authors:  J J Mitchell; A Capua; C Clow; C R Scriver
Journal:  Am J Hum Genet       Date:  1996-10       Impact factor: 11.025

8.  Lack of interest by nonpregnant couples in population-based cystic fibrosis carrier screening.

Authors:  E W Clayton; V L Hannig; J P Pfotenhauer; R A Parker; P W Campbell; J A Phillips
Journal:  Am J Hum Genet       Date:  1996-03       Impact factor: 11.025

9.  Determinants of utilization of Tay-Sachs screening.

Authors:  A P Garber; L D Platt; S J Wang; K Jam; D E Carlson; J I Rotter
Journal:  Obstet Gynecol       Date:  1993-09       Impact factor: 7.661

10.  Psychological implications of genetic screening.

Authors:  T M Marteau
Journal:  Birth Defects Orig Artic Ser       Date:  1992
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  8 in total

Review 1.  The measurement of patient attitudes regarding prenatal and preconception genetic carrier screening and translational behavioral medicine: an integrative review.

Authors:  Jennifer J Shiroff; Mathew J Gregoski
Journal:  Transl Behav Med       Date:  2017-06       Impact factor: 3.046

2.  Knowledge, attitudes, and barriers to carrier screening for the Ashkenazi Jewish panel: a Florida experience : Education and Barriers assessment for Jewish Genetic Diseases.

Authors:  Jessica R L Warsch; Sean Warsch; Elizabeth Herman; Lauren Zakarin; Adele Schneider; Jodi Hoffman; Deborah Wasserman; Deborah Barbouth
Journal:  J Community Genet       Date:  2014-01-12

3.  Research Participants' Preferences for Hypothetical Secondary Results from Genomic Research.

Authors:  Julia Wynn; Josue Martinez; Jimmy Duong; Codruta Chiuzan; Jo C Phelan; Abby Fyer; Robert L Klitzman; Paul S Appelbaum; Wendy K Chung
Journal:  J Genet Couns       Date:  2016-12-29       Impact factor: 2.537

Review 4.  Preconception risk assessment for thalassaemia, sickle cell disease, cystic fibrosis and Tay-Sachs disease.

Authors:  Norita Hussein; Stephen F Weng; Joe Kai; Jos Kleijnen; Nadeem Qureshi
Journal:  Cochrane Database Syst Rev       Date:  2018-03-14

5.  Do people from the Jewish community prefer ancestry-based or pan-ethnic expanded carrier screening?

Authors:  Kim C A Holtkamp; Merel C van Maarle; Maria J E Schouten; Wybo J Dondorp; Phillis Lakeman; Lidewij Henneman
Journal:  Eur J Hum Genet       Date:  2015-05-13       Impact factor: 4.246

6.  Factors for successful implementation of population-based expanded carrier screening: learning from existing initiatives.

Authors:  Kim C A Holtkamp; Inge B Mathijssen; Phillis Lakeman; Merel C van Maarle; Wybo J Dondorp; Lidewij Henneman; Martina C Cornel
Journal:  Eur J Public Health       Date:  2017-04-01       Impact factor: 3.367

7.  Evaluating the model of offering expanded genetic carrier screening to high school students within the Sydney Jewish community.

Authors:  Kristine Barlow-Stewart; Kayley Bardsley; Elle Elan; Jane Fleming; Yemima Berman; Ron Fleischer; Krista Recsei; Daniel Goldberg; John Tucker; Leslie Burnett
Journal:  J Community Genet       Date:  2021-11-30

8.  Carrier screening in individuals of Ashkenazi Jewish descent.

Authors:  Susan J Gross; Beth A Pletcher; Kristin G Monaghan
Journal:  Genet Med       Date:  2008-01       Impact factor: 8.822

  8 in total

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