Literature DB >> 11847298

A public health response to emerging technology: expansion of the Massachusetts newborn screening program.

K Atkinson1, B Zuckerman, J M Sharfstein, D Levin, R J Blatt, H K Koh.   

Abstract

The development of a new technology, called tandem mass spectrometry (tandem MS), has challenged governments worldwide to consider expanding universal newborn screening for rare metabolic disorders. In 1997 the Massachusetts Department of Public Health developed a public process to meet this challenge. After addressing significant medical, legal, ethical, and logistical issues raised by tandem MS, Massachusetts incorporated one new disorder into the mandatory newborn screen and developed an optional pilot program for 20 additional disorders. The Massachusetts experience has wide relevance for other nations and states. As screening protocols are contemplated for entire populations-for newborns and others- it will remain essential that the public participate in an open process of reviewing the justification for and logistics of screening.

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Year:  2001        PMID: 11847298      PMCID: PMC1497306          DOI: 10.1093/phr/116.2.122

Source DB:  PubMed          Journal:  Public Health Rep        ISSN: 0033-3549            Impact factor:   2.792


  19 in total

1.  Discrimination as a consequence of genetic testing.

Authors:  P R Billings; M A Kohn; M de Cuevas; J Beckwith; J S Alper; M R Natowicz
Journal:  Am J Hum Genet       Date:  1992-03       Impact factor: 11.025

2.  Tandem mass spectrometry: a new method for acylcarnitine profiling with potential for neonatal screening for inborn errors of metabolism.

Authors:  D S Millington; N Kodo; D L Norwood; C R Roe
Journal:  J Inherit Metab Dis       Date:  1990       Impact factor: 4.982

3.  State-to-state variations in newborn screening policies.

Authors:  J J Stoddard; P M Farrell
Journal:  Arch Pediatr Adolesc Med       Date:  1997-06

4.  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

5.  Massachusetts metabolic disorders screening program. I. Technics and results of urine screening.

Authors:  H L Levy; P M Madigan; V E Shih
Journal:  Pediatrics       Date:  1972-06       Impact factor: 7.124

6.  National policy development for the clinical application of genetic diagnostic technologies. Lessons from cystic fibrosis.

Authors:  B S Wilfond; K Nolan
Journal:  JAMA       Date:  1993 Dec 22-29       Impact factor: 56.272

7.  Seroprevalence of human immunodeficiency virus among childbearing women. Estimation by testing samples of blood from newborns.

Authors:  R Hoff; V P Berardi; B J Weiblen; L Mahoney-Trout; M L Mitchell; G F Grady
Journal:  N Engl J Med       Date:  1988-03-03       Impact factor: 91.245

8.  Glutaric acidemia type II: heterogeneity of clinical and biochemical phenotypes.

Authors:  J P Loehr; S I Goodman; F E Frerman
Journal:  Pediatr Res       Date:  1990-03       Impact factor: 3.756

9.  Neonatal serologic screening and early treatment for congenital Toxoplasma gondii infection. The New England Regional Toxoplasma Working Group.

Authors:  N G Guerina; H W Hsu; H C Meissner; J H Maguire; R Lynfield; B Stechenberg; I Abroms; M S Pasternack; R Hoff; R B Eaton
Journal:  N Engl J Med       Date:  1994-06-30       Impact factor: 91.245

10.  Medium chain acyl-CoA dehydrogenase deficiency in Pennsylvania: neonatal screening shows high incidence and unexpected mutation frequencies.

Authors:  R Ziadeh; E P Hoffman; D N Finegold; R C Hoop; J C Brackett; A W Strauss; E W Naylor
Journal:  Pediatr Res       Date:  1995-05       Impact factor: 3.756

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  14 in total

1.  Screening for medium chain acyl-CoA dehydrogenase deficiency is being evaluated.

Authors:  S Grosse
Journal:  BMJ       Date:  2001-04-28

Review 2.  Newborn screening for medium chain acyl-CoA dehydrogenase deficiency: evaluating the effects on outcome.

Authors:  Carol Dezateux
Journal:  Eur J Pediatr       Date:  2003-11-20       Impact factor: 3.183

3.  Cystic fibrosis newborn screening: using experience to optimize the screening algorithm.

Authors:  Jaime E Hale; Richard B Parad; Henry L Dorkin; Robert Gerstle; Allen Lapey; Brian P O'Sullivan; Terry Spencer; William Yee; Anne Marie Comeau
Journal:  J Inherit Metab Dis       Date:  2010-06-03       Impact factor: 4.982

4.  The Use of Economic Evaluation to Inform Newborn Screening Policy Decisions: The Washington State Experience.

Authors:  Scott D Grosse; John D Thompson; Yao Ding; Michael Glass
Journal:  Milbank Q       Date:  2016-06       Impact factor: 4.911

5.  Newborn screening: complexities in universal genetic testing.

Authors:  Nancy S Green; Siobhan M Dolan; Thomas H Murray
Journal:  Am J Public Health       Date:  2006-03-29       Impact factor: 9.308

6.  Parental permission for pilot newborn screening research: guidelines from the NBSTRN.

Authors:  Jeffrey R Botkin; Michelle Huckaby Lewis; Michael S Watson; Kathryn J Swoboda; Rebecca Anderson; Susan A Berry; Natasha Bonhomme; Jeffrey P Brosco; Anne M Comeau; Aaron Goldenberg; Edward Goldman; Bradford Therrell; Jill Levy-Fisch; Beth Tarini; Benjamin Wilfond
Journal:  Pediatrics       Date:  2014-01-06       Impact factor: 7.124

7.  Long-term outcome of expanded newborn screening at Boston children's hospital: benefits and challenges in defining true disease.

Authors:  Yuval E Landau; Susan E Waisbren; Lawrence M A Chan; Harvey L Levy
Journal:  J Inherit Metab Dis       Date:  2017-01-04       Impact factor: 4.982

8.  Guidelines for implementation of population-based newborn screening for severe combined immunodeficiency.

Authors:  Anne Marie Comeau; Jaime E Hale; Sung-Yun Pai; Francisco A Bonilla; Luigi D Notarangelo; Mark S Pasternack; H Cody Meissner; Ellen Rae Cooper; Alfred DeMaria; Inderneel Sahai; Roger B Eaton
Journal:  J Inherit Metab Dis       Date:  2010-05-20       Impact factor: 4.982

9.  Expectations and values about expanded newborn screening: a public engagement study.

Authors:  Robin Z Hayeems; Fiona A Miller; Yvonne Bombard; Denise Avard; June Carroll; Brenda Wilson; Julian Little; Pranesh Chakraborty; Jessica Bytautas; Yves Giguere; Judith Allanson; Renata Axler
Journal:  Health Expect       Date:  2013-02-01       Impact factor: 3.377

10.  Paradigm shifts in newborn screening?

Authors:  Anne Marie Comeau
Journal:  Genet Med       Date:  2018-08-10       Impact factor: 8.822

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