Heterozygote Carrier Testing in High Schools Abroad: What are the Lessons for the U.S.?


  • Lainie Friedman Ross M.D., Ph.D.

    1. Carolyn and Matthew Bucksbaum Professor at the University of Chicago. She is an Associate Director of the MacLean Center for Clinical Medical Ethics and the Section Chief of Community Health Sciences in the Institute for Molecular Pediatric Sciences at the University of Chicago.
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The main value of carrier detection in the general population is to determine reproductive risks. In this manuscript I examine the practice of providing carrier screening programs in the school setting. While the data show that high school screening programs can achieve high uptake, I argue that this may reflect a lack of full understanding about risks, benefits, and alternatives, and the right not to know. It may also reflect the inherent coercion in group testing, particularly for adolescents who are prone to peer pressure. The problem of carrier screening in the schools is compounded when the condition has a predilection for certain groups based on race, ethnicity or religion. I examine programs around the world that seek to test high school students for Tay Sachs and Cystic Fibrosis carrier status. I argue that carrier programs should be designed so as to minimize stigma and to allow individuals to refuse. The mandatory school environment cannot achieve this. Rather, I conclude that screening programs should be designed to attract young adults and not adolescents to participate in a more voluntary venue.