Can population-based carrier screening be left to the community?

Area of Science:

• Genetics
• Public Health
• Sociology

Background:

• Increasing identification of disease-associated genes and mutations necessitates addressing community engagement in genetic screening.
• The Orthodox Jewish community, despite research focus, faces social and religious barriers to public health genetic services.

Purpose of the Study:

• To analyze the Dor Yeshorim program as a model for integrating genetic screening into traditional communities.
• To identify discrepancies between the intended goals and actual implementation of Dor Yeshorim.
• To explore the implications of community-led carrier screening and its potential unintended consequences.

Main Methods:

• Commentary and critical analysis of the Dor Yeshorim program's structure and outcomes.
• Examination of the social and religious factors influencing participation in genetic screening.
• Discussion of the trade-offs inherent in community-based genetic screening initiatives.

Main Results:

• Dor Yeshorim serves as a prototype for merging genetic screening with traditional community values.
• Gaps exist between the program's rationale and its practical application.
• Community-led screening involves trade-offs and can lead to unintended consequences.

Conclusions:

• Community genetics programs require careful consideration of their implementation and impact.
• The model of community-managed carrier screening raises questions about ethical oversight and long-term outcomes.
• Further examination is needed to understand the full implications of community genetics initiatives.