Open AccessBenefits and burdens of newborn screening: public understanding and decision-making
Author(s) -
Stuart G. Nicholls,
Brenda J. Wilson,
Holly Etchegary,
Jamie Brehaut,
Beth K. Potter,
Robin Z. Hayeems,
Pranesh Chakraborty,
Jennifer Milburn,
Daryl Pullman,
Lesley Turner,
June C. Carroll
Publication year - 2014
Publication title -
personalized medicine
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 0.489
H-Index - 31
eISSN - 1744-828X
pISSN - 1741-0541
DOI - 10.2217/pme.14.46
Subject(s) - overdiagnosis , confidentiality , medicine , psychological intervention , anxiety , public health , natural history , identification (biology) , informed consent , intensive care medicine , psychiatry , alternative medicine , nursing , political science , pathology , law , botany , biology
In this article we review the literature regarding the public understanding of the potential benefits and burdens of expanded newborn bloodspot screening. We draw attention to broadened notions of benefit that go beyond early identification of asymptomatic individuals and interventions to reduce morbidity or mortality, and include benefits gained by families through knowledge that may facilitate life choices, as well as gains generated by avoiding diagnostic delays. We also reflect on burdens such as increasing false-positive results and parental anxiety, together with risks of overdiagnosis when the natural history of a condition is poorly understood. We conclude that expanded notions of benefit and burden bring with them implications for parental consent and confidentiality and the secondary use of bloodspots.