Why We Need to Rethink Ethnicity-Based Genetic Testing
It is true that certain diseases are more prevalent in specific ethnic groups, but they are not exclusive to these groups. According to the National Tay-Sachs & Allied Disease Association, the majority of today's children affected by "Jewish" diseases are from families with no known Jewish ancestry. As an example, writer and activist Emily Rapp lost her son to Tay-Sachs disease, and her Irish family carries a mutation that is more common in people of Moroccan ancestry. She learned this only after giving birth to a son who slowly lost his hearing, vision, muscle movement, brain function and ability to breathe. Rapp, who at the time was married to a man of Jewish ancestry, did not receive the right type of genetic screening. Herein lies the problem: Access to genetic data that impacts the health of a baby should not be dependent on how a woman defines herself ethnically.
