Divergent evolution of newborn screening: Israel and the US as gene worlds

Abstract

Newborn Screening provides a critical case-study for the cross-cultural analysis of globalizing medical technologies. While the evidence-base that informs decisions of which conditions to screen is internationally accepted, the number of disorders screened for varies widely between countries. In this article, we explore the different ‘gene worlds’ that constitute newborn screening programs in Israel and the US. After situating the program in both countries, we focus on two critical differences: the relationship of newborn screening to prenatal and preconception screening and the countries’ willingness to screen high-risk ethnic populations. We describe how the different investment in newborn screening rests on the prioritization of prevention. Because of negative experiences with racial genetic carrier screening for sickle cell anemia and the political sensitivity related to abortion, the US built its genetic screening programs around newborn screening with an aim of secondary prevention. Israel instead invested in a broad range of genetic technologies aiming for primary prevention in the preconceptional and prenatal periods. We conclude by discussing the broader relevance of gene worlds, in which prospective parents, state agencies, advocacy groups, and medical professionals coalesce around country-specific priorities, to the sociological understanding of divergent evolution of medical technologies.