Perceptions of Carrier Screening in Anabaptist and Jewish Populations
Ethical Legal Social Issues (ELSI) Public Health and Policy
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Primary Categories:
- General Education
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Secondary Categories:
- General Education
Introduction:
We performed a systematic review to analyze common themes and reactions to carrier screening among Plain communities (Amish, Mennonite, Hutterite) and Ashkenazi Jewish (AJ) populations, offering insights on screening populations with large genetic burden.
Methods:
Systematic searches were conducted in PubMed, Scopus, and Google Scholar with key mesh terms for primary studies published from 1990 to 2024. Studies were included if the primary focus was public attitudes and ethical considerations of carrier screening in Plain and AJ populations. Quantitative and qualitative studies were included whether carrier screening was completed or posed as a hypothetical scenario. Studies with carrier screening in the form of enzyme assays, single gene, and multigene panels were included. Data were analyzed thematically based on key results in the study.
Results:
Of 361 papers, we identified 6 papers specific to the plain community and 17 specific to the AJ population. Of the 17 studies, 7 related to the Orthodox AJ population which has historically used institutional carrier screening in the form of Dor Yeshorim. Four key themes emerged from these studies including knowledge and education, reasons for testing, attitudes toward testing, and impacts on reproductive decisions. The plain community showed varied levels of understanding and attitudes. Despite a willingness to undergo carrier screening and use genetic counseling services, strong opposition to abortion and low initial utilization of these services are common across these groups. Jewish populations had high baseline genetic knowledge, though Orthodox Jews faced accessibility and referral network issues. Similarly, access to testing was a concern among Plain communities as well. Overall, educational interventions significantly improved knowledge and acceptance of genetic testing in all populations.
Conclusion:
Recognizing the diverse views on carrier screening is essential for effective genetic testing and treatment. The review highlights the need for culturally sensitive genetic counseling and targeted educational programs to address community-specific concerns.
We performed a systematic review to analyze common themes and reactions to carrier screening among Plain communities (Amish, Mennonite, Hutterite) and Ashkenazi Jewish (AJ) populations, offering insights on screening populations with large genetic burden.
Methods:
Systematic searches were conducted in PubMed, Scopus, and Google Scholar with key mesh terms for primary studies published from 1990 to 2024. Studies were included if the primary focus was public attitudes and ethical considerations of carrier screening in Plain and AJ populations. Quantitative and qualitative studies were included whether carrier screening was completed or posed as a hypothetical scenario. Studies with carrier screening in the form of enzyme assays, single gene, and multigene panels were included. Data were analyzed thematically based on key results in the study.
Results:
Of 361 papers, we identified 6 papers specific to the plain community and 17 specific to the AJ population. Of the 17 studies, 7 related to the Orthodox AJ population which has historically used institutional carrier screening in the form of Dor Yeshorim. Four key themes emerged from these studies including knowledge and education, reasons for testing, attitudes toward testing, and impacts on reproductive decisions. The plain community showed varied levels of understanding and attitudes. Despite a willingness to undergo carrier screening and use genetic counseling services, strong opposition to abortion and low initial utilization of these services are common across these groups. Jewish populations had high baseline genetic knowledge, though Orthodox Jews faced accessibility and referral network issues. Similarly, access to testing was a concern among Plain communities as well. Overall, educational interventions significantly improved knowledge and acceptance of genetic testing in all populations.
Conclusion:
Recognizing the diverse views on carrier screening is essential for effective genetic testing and treatment. The review highlights the need for culturally sensitive genetic counseling and targeted educational programs to address community-specific concerns.
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