Literature DB >> 16195526

Newborn screening for developmental disabilities: reframing presumptive benefit.

Donald B Bailey1, Debra Skinner, Steven F Warren.   

Abstract

A fundamental tenet of newborn screening is that screening should lead to a proven benefit for the infant. The standard is usually construed as medical benefit that significantly improves a child's health. Screening for many conditions that cause developmental disabilities does not currently meet this standard. We argue for expanding concepts of presumptive benefit. Newborn screening provides access to early intervention programs that are shown to positively influence child development and support families. Consumers want information about their children's health and their own reproductive risk, and they have a broader view than policymakers of what constitutes a treatable disorder. Newborn screening provides other societal benefits that, in the absence of data showing harm and with appropriate attention to ethical and legal issues, warrant consideration of an expansion of targets for newborn screening.

Entities:  

Keywords:  Health Care and Public Health

Mesh:

Year:  2005        PMID: 16195526      PMCID: PMC1449454          DOI: 10.2105/AJPH.2004.051110

Source DB:  PubMed          Journal:  Am J Public Health        ISSN: 0090-0036            Impact factor:   9.308


  30 in total

Review 1.  Early intervention and early experience.

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Journal:  Am Psychol       Date:  1998-02

Review 2.  Effectiveness of early intervention for vulnerable children: a developmental perspective.

Authors:  M J Guralnick
Journal:  Am J Ment Retard       Date:  1998-01

3.  Public participation in medical policy-making and the status of consumer autonomy: the example of newborn-screening programs in the United States.

Authors:  E H Hiller; G Landenburger; M R Natowicz
Journal:  Am J Public Health       Date:  1997-08       Impact factor: 9.308

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Authors:  W T Greenough; J E Black; C S Wallace
Journal:  Child Dev       Date:  1987-06

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Authors: 
Journal:  World Health Organ Tech Rep Ser       Date:  1968

6.  Screening and the new genetics; a public health perspective on the ethical debate.

Authors:  D H Stone; S Stewart
Journal:  J Public Health Med       Date:  1996-03

Review 7.  Newborn screening for fragile X syndrome.

Authors:  Donald B Bailey
Journal:  Ment Retard Dev Disabil Res Rev       Date:  2004

8.  Molecular and comparative genetics of mental retardation.

Authors:  Jennifer K Inlow; Linda L Restifo
Journal:  Genetics       Date:  2004-02       Impact factor: 4.562

9.  Genetic testing for children and adolescents. Who decides?

Authors:  D C Wertz; J H Fanos; P R Reilly
Journal:  JAMA       Date:  1994-09-21       Impact factor: 56.272

10.  An MRI study of brain size in autism.

Authors:  J Piven; S Arndt; J Bailey; S Havercamp; N C Andreasen; P Palmer
Journal:  Am J Psychiatry       Date:  1995-08       Impact factor: 18.112

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  25 in total

1.  Health-care providers' views on pursuing reproductive benefit through newborn screening: the case of sickle cell disorders.

Authors:  Yvonne Bombard; Fiona A Miller; Robin Z Hayeems; Brenda J Wilson; June C Carroll; Martha Paynter; Julian Little; Judith Allanson; Jessica P Bytautas; Pranesh Chakraborty
Journal:  Eur J Hum Genet       Date:  2011-11-09       Impact factor: 4.246

2.  Reply to Ross' commentary: Reproductive benefit through newborn screening: preferences, policy and ethics.

Authors:  Yvonne Bombard; Fiona A Miller
Journal:  Eur J Hum Genet       Date:  2012-02-29       Impact factor: 4.246

3.  Design and evaluation of a decision aid for inviting parents to participate in a fragile X newborn screening pilot study.

Authors:  Donald B Bailey; Megan A Lewis; Shelly L Harris; Tracey Grant; Carla Bann; Ellen Bishop; Myra Roche; Sonia Guarda; Leah Barnum; Cynthia Powell; Bradford L Therrell
Journal:  J Genet Couns       Date:  2012-06-27       Impact factor: 2.537

4.  Debating clinical utility.

Authors:  Wylie Burke; A-M Laberge; N Press
Journal:  Public Health Genomics       Date:  2010-04-15       Impact factor: 2.000

Review 5.  Genetic screening: A primer for primary care.

Authors:  Anne Andermann; Ingeborg Blancquaert
Journal:  Can Fam Physician       Date:  2010-04       Impact factor: 3.275

Review 6.  Newborn bloodspot screening policy framework for Australia.

Authors:  Peter O'Leary; Susannah Maxwell
Journal:  Australas Med J       Date:  2015-09-30

7.  Supporting family adaptation to presymptomatic and "untreatable" conditions in an era of expanded newborn screening.

Authors:  Donald B Bailey; F Daniel Armstrong; Alex R Kemper; Debra Skinner; Steven F Warren
Journal:  J Pediatr Psychol       Date:  2008-03-30

8.  The expansion of newborn screening: is reproductive benefit an appropriate pursuit?

Authors:  Yvonne Bombard; Fiona A Miller; Robin Z Hayeems; Denise Avard; Bartha M Knoppers; Martina C Cornel; Pascal Borry
Journal:  Nat Rev Genet       Date:  2009-10       Impact factor: 53.242

9.  Parents' decisions to screen newborns for FMR1 gene expansions in a pilot research project.

Authors:  Debra Skinner; Summer Choudhury; John Sideris; Sonia Guarda; Allen Buansi; Myra Roche; Cynthia Powell; Donald B Bailey
Journal:  Pediatrics       Date:  2011-05-29       Impact factor: 7.124

Review 10.  Genetic screening.

Authors:  Wylie Burke; Beth Tarini; Nancy A Press; James P Evans
Journal:  Epidemiol Rev       Date:  2011-06-27       Impact factor: 6.222

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