Literature DB >> 24415495

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

Jessica R L Warsch1, Sean Warsch, Elizabeth Herman, Lauren Zakarin, Adele Schneider, Jodi Hoffman, Deborah Wasserman, Deborah Barbouth.   

Abstract

The knowledge, attitudes, and barriers to Jewish genetic diseases (JGDs) and screening and their relative importance in reproductive decision-making were assessed in a population-based sample of Ashkenazi Jewish young adults in Florida. These adults attended educational screening fairs hosted by The Victor Center for the Prevention of Jewish Genetic Diseases at the University of Miami. Parametric and nonparametric tests were used as appropriate to analyze data from a single group pretest/posttest design. Four hundred twelve individuals (mean age = 24.9; 54.7 % female, 45.3 % male) completed the questionnaires. Participants' level of knowledge increased from pre- to post-intervention (81.4 vs. 91.0 %; p < 0.0001). Concern about the possibility of being a carrier of a JGD was significantly higher after an educational session (5-point Likert scale mean difference = 0.45; p < 0.0001), as was their level of concern regarding having an affected child (mean difference = 0.20; p < 0.0001). The number of participants who agreed or strongly agreed that the test results would not have any influence on their reproductive behavior was lower after the session (17.2 vs. 20.8 %; p < 0.0001). This study demonstrates that an educational carrier screening program increased knowledge and elucidated awareness of the attitudes and barriers toward JGDs and carrier screening.

Entities:  

Year:  2014        PMID: 24415495      PMCID: PMC4059852          DOI: 10.1007/s12687-013-0179-4

Source DB:  PubMed          Journal:  J Community Genet        ISSN: 1868-310X


  24 in total

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4.  "It's about having the choice": stakeholder perceptions of population-based genetic carrier screening for fragile X syndrome.

Authors:  Alison D Archibald; Chriselle L Hickerton; Alice M Jaques; Samantha Wake; Jonathan Cohen; Sylvia A Metcalfe
Journal:  Am J Med Genet A       Date:  2012-12-13       Impact factor: 2.802

5.  Limitations of enzyme replacement therapy: current and future.

Authors:  J E Wraith
Journal:  J Inherit Metab Dis       Date:  2006 Apr-Jun       Impact factor: 4.982

6.  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

7.  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

8.  Tay-Sachs disease--carrier screening, prenatal diagnosis, and the molecular era. An international perspective, 1970 to 1993. The International TSD Data Collection Network.

Authors:  M Kaback; J Lim-Steele; D Dabholkar; D Brown; N Levy; K Zeiger
Journal:  JAMA       Date:  1993-11-17       Impact factor: 56.272

9.  Tay Sachs disease carrier screening in schools: educational alternatives and cheekbrush sampling.

Authors:  Alexandra A Gason; Sylvia A Metcalfe; Martin B Delatycki; Vicki Petrou; Edith Sheffield; Agnes Bankier; Maryanne Aitken
Journal:  Genet Med       Date:  2005 Nov-Dec       Impact factor: 8.822

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

Authors:  G Hegwer; C Fairley; J Charrow; K E Ormond
Journal:  J Genet Couns       Date:  2006-02       Impact factor: 2.717

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  5 in total

1.  Experiences among Women with Positive Prenatal Expanded Carrier Screening Results.

Authors:  Erin Rothwell; Erin Johnson; Amber Mathiesen; Kylie Golden; Audrey Metcalf; Nancy C Rose; Jeffrey R Botkin
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2.  Preconception carrier screening for multiple disorders: evaluation of a screening offer in a Dutch founder population.

Authors:  Inge B Mathijssen; Kim C A Holtkamp; Cecile P E Ottenheim; Janneke M C van Eeten-Nijman; Phillis Lakeman; Hanne Meijers-Heijboer; Merel C van Maarle; Lidewij Henneman
Journal:  Eur J Hum Genet       Date:  2018-01-10       Impact factor: 4.246

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

4.  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

5.  A collaborative genetic carrier screening model for the British Ashkenazi Jewish community.

Authors:  Monica Ziff; Juliette Harris
Journal:  J Community Genet       Date:  2021-11-29
  5 in total

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