Genetic Disorders in the Persian Community and the Lack of Genetic Screening Awareness

Abstract

The human genome is large and complex, yet mutations in a single gene can cause many abnormalities, leading to genetic disorders. While there have been genetic disorders since the beginning of creation, it is a growing field of science, with new methods and tools to diagnose humans before having children. Growing up in a Persian community, I rarely encountered adults or children with genetic disorders and was told that genetic disorders were solely in Ashkenazim. Later, however, I realized that Sephardim do carry genetic disorders and there were many in my community who unfortunately suffered from horrible genetic disorders. However, the issue was that Sephardim did not publicize to the Persian community the existence of those family members with genetic abnormalities. It was considered embarrassing to have a child with a disorder. This formed the impetus for this Senior Project, i.e., to elucidate the occurrence of such disorders within the Persian community and to better understand the unwillingness of community leaders to inform their constituents of the need for genetic screening. Also, I was concerned whether the well-known and established organizations aimed at genetic screening of Ashkenazim had the methodologies to screen for Sephardic disorders and, if so, why such tests were not publicized in the Persian community. Another question investigated was the opinions of Persian community rabbis and respected leaders and of Persian students at Stern College for Women and at Yeshiva College about the existence of Persian genetic disorders and of the availability of genetic screening. ---- To obtain a better understanding of this community I first researched the history of Persian Jewry and identified some of the most common genetic disorders found among them. For comparative purposes, I compared the Ashkenazi approach to genetic screening with that of the Persian community. Finally, several interviews were conducted with community leaders, as well as SCW/YC students, to better explain the resistance of the Persian community to genetic screening.