Two faces of patient advocacy: the current controversy in newborn screening

Newborn screening programmes began in the 1960s, have traditionally been conducted without parental permission and have grown dramatically in the last decade. Whether these programmes serve patients’ best interests has recently become a point of controversy. Privacy advocates, concerned that newborn...

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Bibliographic Details
Main Author: Arnold, G. (Author)
Format: Electronic Article
Language:English
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Published: BMJ Publ. 2014
In: Journal of medical ethics
Year: 2014, Volume: 40, Issue: 8, Pages: 558-562
Online Access: Volltext (JSTOR)
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Summary:Newborn screening programmes began in the 1960s, have traditionally been conducted without parental permission and have grown dramatically in the last decade. Whether these programmes serve patients’ best interests has recently become a point of controversy. Privacy advocates, concerned that newborn screening infringes upon individual liberties, are demanding fundamental changes to these programmes. These include parental permission and limiting the research on the blood samples obtained, an agenda at odds with the viewpoints of newborn screening advocates. This essay presents the history of newborn screening in the USA, with attention to factors that have contributed to concerns about these programmes. The essay suggests that the rapid increase in the number of disorders screened for and the addition of research without either public knowledge or informed consent were critical to the development of resistance to mandatory newborn screening and research. Future newborn screening initiatives should include public education and comment to ensure continued support.
ISSN:1473-4257
Contains:Enthalten in: Journal of medical ethics
Persistent identifiers:DOI: 10.1136/medethics-2012-101019