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Newborn screening and maternal diagnosis: Rethinking family benefit

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  • Buchbinder, Mara
  • Timmermans, Stefan

Abstract

In a significant departure from established criteria for population screening, a 2006 report by the American College of Medical Geneticists (ACMG) argued that newborn screening may be justified by family and societal benefits even if the screened infant does not stand to benefit. The ACMG report has since been the backdrop for considerable debate about the presumptive benefits of newborn screening. Understandings of family benefits have focused on how information provided by newborn screening may enhance reproductive decision-making, reduce the diagnostic odyssey, and alleviate the burden of raising a child with special health care needs. This paper identifies and describes an additional consequence of newborn screening for families. Specifically, we draw upon audio-recordings and clinical observations from a three-year ethnographic study of expanded newborn screening in California (November 2007–July 2010) to examine the potential for newborn screening to diagnose mothers with genetic disorders. This consequence of expanded newborn screening suggests the possibility of a different type of family spillover from that anticipated by the ACMG report. However, whether this knowledge benefits families depends on how the significance of genetic information is established in the clinic and the family’s ability to act on this information. We show that the newborn screening health care infrastructure is not designed to provide treatment for adult patients, so the identification of maternal disease does not necessarily prove beneficial for families.

Suggested Citation

  • Buchbinder, Mara & Timmermans, Stefan, 2011. "Newborn screening and maternal diagnosis: Rethinking family benefit," Social Science & Medicine, Elsevier, vol. 73(7), pages 1014-1018.
  • Handle: RePEc:eee:socmed:v:73:y:2011:i:7:p:1014-1018
    DOI: 10.1016/j.socscimed.2011.06.062
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    References listed on IDEAS

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    1. Geelen, Els & Van Hoyweghen, Ine & Horstman, Klasien, 2011. "Making genetics not so important: Family work in dealing with familial hypertrophic cardiomyopathy," Social Science & Medicine, Elsevier, vol. 72(11), pages 1752-1759, June.
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    4. Chilibeck, Gillian & Lock, Margaret & Sehdev, Megha, 2011. "Postgenomics, uncertain futures, and the familiarization of susceptibility genes," Social Science & Medicine, Elsevier, vol. 72(11), pages 1768-1775, June.
    5. Levy, H.L., 1982. "Maternal PKU: control of an emerging problem," American Journal of Public Health, American Public Health Association, vol. 72(12), pages 1320-1321.
    6. Boenink, Marianne, 2011. "Unambiguous test results or individual independence? The role of clients and families in predictive BRCA-testing in the Netherlands compared to the USA," Social Science & Medicine, Elsevier, vol. 72(11), pages 1793-1801, June.
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    Cited by:

    1. White, Ashley L. & Boardman, Felicity & McNiven, Abigail & Locock, Louise & Hinton, Lisa, 2021. "Absorbing it all: A meta-ethnography of parents’ unfolding experiences of newborn screening," Social Science & Medicine, Elsevier, vol. 287(C).

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