Newborn screening and maternal diagnosis: Rethinking family benefit

Mara Buchbinder and Stefan Timmermans

Social Science & Medicine, 2011, vol. 73, issue 7, 1014-1018

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.

Keywords: USA; Newborn screening; Genetic screening; Genetic technologies; Health and families; Maternal health; Benefit (search for similar items in EconPapers)
Date: 2011
References: View references in EconPapers View complete reference list from CitEc
Citations: View citations in EconPapers (2)

Downloads: (external link)
http://www.sciencedirect.com/science/article/pii/S0277953611004382
Full text for ScienceDirect subscribers only

Related works:
This item may be available elsewhere in EconPapers: Search for items with the same title.

Export reference: BibTeX RIS (EndNote, ProCite, RefMan) HTML/Text

Persistent link: https://EconPapers.repec.org/RePEc:eee:socmed:v:73:y:2011:i:7:p:1014-1018

Ordering information: This journal article can be ordered from
http://www.elsevier.com/wps/find/supportfaq.cws_home/regional
http://www.elsevier. ... _01_ooc_1&version=01

DOI: 10.1016/j.socscimed.2011.06.062

Access Statistics for this article

Social Science & Medicine is currently edited by Ichiro (I.) Kawachi and S.V. (S.V.) Subramanian

More articles in Social Science & Medicine from Elsevier
Bibliographic data for series maintained by Catherine Liu ().