A test of faith? Attitudes of ultraorthodox Jewish parents of children with down syndrome toward prenatal testing

Abstract

The Haredi (ultraorthodox Jewish) community in Israel presents distinct views on disability and prenatal testing compared to the pro-testing attitudes of the Israeli general public. Based on qualitative analysis of semi-structured interviews with Haredi parents of children with Down syndrome, this study explores the interplay between their personal experiences and community norms in the creation of views on disability and pregnancy management. The experiences of life with disability carry varied positive and negative aspects, for both secular and religious parents. However, while this variability sometimes led to re-consideration (for better or worse) of views on disability and prenatal testing among secular parents, we demonstrate that parenting a child with disability did not change the views of Haredi parents regarding the futility of prenatal testing and the value of disability. For them, the Haredi model of disability remained the dominant framework through which life is experienced.

Points of interest

• While the Israeli general public is supportive of tests performed during pregnancy with the aim of selective terminations of pregnancies when anomalies in the fetus are detected, the most religious Jewish (Haredi) community tends to avoid such testing.

• The study demonstrates the interplay between cultural norms and personal experiences in forming attitudes toward disability.

• For Haredi parents, life with a child with Down syndrome did not essentially change their positive perceptions of disability and their rejection of testing the fetus in future pregnancies.

• Haredi parents’ critical view of testing during pregnancy reflects their religious perspective, rather than the perspective of people with disabilities and their empowerment.

• Haredi parents view children with Down syndrome as ‘higher souls’ sent by God as a test of faith and a mission, thus constructing testing the fetus for Down syndrome as futile.

Keywords:

• Ultraorthodox (Haredi) Jews
• prenatal testing
• Down syndrome
• Israel
• religion
• parenthood

Acknowledgements

We are very thankful to all the participants of this study for sharing their insights and experiences. We are grateful to the German Research Foundation (DFG) for funding this work as part of the comparative research project ‘Meanings and Practices of Prenatal Genetics in Germany and Israel’ (PreGGI) #RE 2951/3‐1 and to our project partners, Christoph Rehmann‐Sutter, Christina Schües, Hannes Foth and Stefan Reinsch.

Disclosure statement

No potential conflict of interest was reported by the authors.

Additional information

Funding

This work was supported by Deutsche Forschungsgemeinschaft.