Balancing benefits and risks for cystic fibrosis newborn screening: implications for policy decisions

Wilfond, Benjamin S.; Parad, Richard B.; Fost, Norman

doi:10.1016/j.jpeds.2005.08.019

Cited by 30 publications

(26 citation statements)

References 33 publications

(29 reference statements)

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“…In some instances, ambiguous diagnostic-test results may be caused by the presence of a "variant" of CF that places the family in a prolonged period of diagnostic uncertainty without a clear compensating benefit attributable to the screen or the evaluation. 60,67,68 Ultimately, some of these infants may show classic signs of CF, some may never express disease, and some may develop mild phenotypes (eg, isolated congenital bilateral absence of the vas deferens) so that the interventions prompted by CF NBS might have limited clinical value. Debate continues on the appropriateness of identifying, labeling, following up, or treating infants in the absence of a clear understanding of the prognosis of their particular disorder.…”

Section: Diagnostic Dilemmasmentioning

confidence: 99%

Guidelines for Implementation of Cystic Fibrosis Newborn Screening Programs: Cystic Fibrosis Foundation Workshop Report

et al. 2007

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Newborn screening for cystic fibrosis offers the opportunity for early intervention and improved outcomes. This summary, resulting from a workshop sponsored by the Cystic Fibrosis Foundation to facilitate implementation of widespread high quality cystic fibrosis newborn screening, outlines the steps necessary for success based on the experience of existing programs. Planning should begin with a workgroup composed of those who will be responsible for the success of the local program, typically including the state newborn screening program director and cystic fibrosis care center directors. The workgroup must develop a screening algorithm based on program resources and goals including mechanisms available for sample collection, regional demographics, the spectrum of cystic fibrosis disease to be detected, and acceptable failure rates of the screen. The workgroup must also ensure that all necessary guidelines and resources for screening, diagnosis, and care be in place prior to cystic fibrosis newborn screening implementation. These include educational materials for parents and primary care providers; systems for screening and for providing diagnostic testing and counseling for screen-positive infants and their families; and protocols for care of this unique population. This summary explores the benefits and risks of various screening algorithms, including complex situations that can occur involving unclear diagnostic results, and provides guidelines and sample materials for state newborn screening programs to develop and implement high quality screening for cystic fibrosis.

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Section: Diagnostic Dilemmasmentioning

confidence: 99%

Guidelines for Implementation of Cystic Fibrosis Newborn Screening Programs: Cystic Fibrosis Foundation Workshop Report

et al. 2007

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“…Sans verser dans un futurisme qui considère-rait comme inéluctable un profilage génétique redouté ou annoncé [6], ce déve-loppement nous incite à en étudier les enjeux sociaux et politiques. Parmi ces dépistages, celui qui concerne la mucoviscidose offre une matière particulièrement riche pour le chercheur en sciences sociales, car il a alimenté (et alimente encore) un débat dans l'arène biomédicale internationale [7][8][9]. Une première exploration de la bibliographique a révélé que le débat était triple : le dépistage néonatal de la mucoviscidose (DNM) apportait-il des bénéfices suffisants par rapport aux inconvénients ?…”

Section: Joëlle Vaillyunclassified

Dépisterles nouveau-nés

Vailly

2007

Med Sci (Paris)

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“…The application of these criteria to other disorders with less evidence of overwhelming immediate benefit poses challenges. Alternative frameworks for evaluating the balance of benefits and risks and approaches to screening that mitigate the risks might need to be considered for disorders such as CF (14).…”

Section: Mmwrmentioning

confidence: 99%

“…On the basis of previous experience with genetic screening programs (1,126,127), certain psychosocial risks were anticipated, notably parental anxiety and disturbance of the parent-child bond. These risks are related to the communication process and the experience of families being informed about screening results (14). Appropriate resources for diagnostic evaluations, treatment for infants with CF, and counseling for families might help mitigate these risks (128)(129)(130).…”

Section: Evidence For Risks Of Harmmentioning

confidence: 99%

Newborn Screening for Cystic Fibrosis: Evaluation of Benefits and Risks and Recommendations for State Newborn Screening Programs—

Grosse¹,

Boyle²,

Botkin³

et al. 2005

The Journal of Pediatrics

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Recommendations and ReportsOctober Disclosure of Relationship CDC, our planners, and our content specialists wish to disclose they have no financial interests or other relationships with the manufacturers of commercial products, suppliers of commercial services, or commercial supporters with the exception of Anne Marie Comeau, Ph.D. She wishes to disclose that she is employed by the University of Massachusetts Medical School, which operates a newborn screening program. This report does not include any discussion of the unlabeled use of a product or a product under investigational use.

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Balancing benefits and risks for cystic fibrosis newborn screening: implications for policy decisions

Cited by 30 publications

References 33 publications

Guidelines for Implementation of Cystic Fibrosis Newborn Screening Programs: Cystic Fibrosis Foundation Workshop Report

Guidelines for Implementation of Cystic Fibrosis Newborn Screening Programs: Cystic Fibrosis Foundation Workshop Report

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Newborn Screening for Cystic Fibrosis: Evaluation of Benefits and Risks and Recommendations for State Newborn Screening Programs—

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