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

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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.

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Notes

  1. https://www.cdc.gov/mmwr/preview/mmwrhtml/rr5003a1.htm#tab1.

  2. http://www.pewforum.org/religious-landscape-study/state/california/.

  3. http://www.cbs.gov.il/reader/?MIval=cw_usr_view_SHTML&ID=705.

  4. https://www.census.gov/quickfacts/table/PST045216/06.

  5. The Israeli penal law concerning the interruption of pregnancy (1977) provides a flexible legal framework. On the one hand, it sends out an ideological message de-legitimizing ‘abortion on demand’ and prohibiting abortion due to financial distress. On the other hand, it provides elbow room for the hospital committees to accept applications for abortion on the basis of medical reasons (to do with the mother, the foetus or both) or in cases of underage or unwed mothers, or of adultery, rape or incest.

  6. For example, writing in the context of screening for Gaucher's Disease, a group of Israeli medical geneticists recently claimed that "the expected practical benefit of carrier screening programs has traditionally been reduction in the birth prevalence of newborns affected with the disease through termination of pregnancies" (Zuckerman et al, 2007, p. 1286).

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Acknowledgements

We thank the Editor and the reviewers for their helpful comments. This study was generously funded by a BSF (US-Israel Binational Science Foundation) Grant #2012109 entitled “Newborn Screening (NBS) in the U.S. and Israel: A Social Perspective on the Expansion and Reception of a Changing Public Health Program,” for which we are very grateful.

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  1. Department of Sociology and Anthropology, Ben-Gurion University of the Negev, Beer-Sheva, Israel

    Aviad E. Raz

  2. Department of Sociology-UCLA, 216 Haines Hall, 375 Portola Plaza, Los Angeles, CA, 90095-1551, USA

    Stefan Timmermans

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Raz, A.E., Timmermans, S. Divergent evolution of newborn screening: Israel and the US as gene worlds. BioSocieties 13, 580–600 (2018). https://doi.org/10.1057/s41292-017-0110-z

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