Literature DB >> 23209103

Retention and research use of residual newborn screening bloodspots.

Jeffrey R Botkin1, Aaron J Goldenberg, Erin Rothwell, Rebecca A Anderson, Michelle Huckaby Lewis.   

Abstract

The storage and use of residual newborn screening dried blood specimens has generated significant controversy in the past 5 years, primarily because of public concerns over the lack of parental knowledge and consent for these activities. State policies addressing the management of these specimens vary widely, and there is currently little guidance to aid new state policy development to address the concerns of program professionals, investigators, and the general public. This article offers guidance for state policy based on multiple sources of data, including public attitudes, professional statements, state experience, and an analysis of the ethical, social, legal, and biomedical issues from a multidisciplinary group of scholars. This guidance will be useful for state programs that seek to develop policies that are informed by a contemporary analysis of the key ethical, legal, and social aspects of this practice. This article represents the work of the authors and does not represent American Academy of Pediatrics policy.

Mesh:

Year:  2012        PMID: 23209103      PMCID: PMC3529945          DOI: 10.1542/peds.2012-0852

Source DB:  PubMed          Journal:  Pediatrics        ISSN: 0031-4005            Impact factor:   7.124


  33 in total

1.  Serving the family from birth to the medical home. Newborn screening: a blueprint for the future - a call for a national agenda on state newborn screening programs

Authors: 
Journal:  Pediatrics       Date:  2000-08       Impact factor: 7.124

Review 2.  Analysis of educational materials and destruction/opt-out initiatives for storage and use of residual newborn screening samples.

Authors:  Susanne B Haga
Journal:  Genet Test Mol Biomarkers       Date:  2010-09-21

3.  Preliminary investigation of the use of dried-blood spots for the assessment of in utero exposure to environmental pollutants.

Authors:  V W Burse; M R DeGuzman; M P Korver; A R Najam; C C Williams; W H Hannon; B L Therrell
Journal:  Biochem Mol Med       Date:  1997-08

4.  Genetics. No longer de-identified.

Authors:  Amy L McGuire; Richard A Gibbs
Journal:  Science       Date:  2006-04-21       Impact factor: 47.728

5.  Two-tiered immunoreactive trypsinogen-based newborn screening for cystic fibrosis in Colorado: screening efficacy and diagnostic outcomes.

Authors:  Marci K Sontag; Keith B Hammond; Julian Zielenski; Jeffrey S Wagener; Frank J Accurso
Journal:  J Pediatr       Date:  2005-09       Impact factor: 4.406

6.  Guidelines for the retention, storage, and use of residual dried blood spot samples after newborn screening analysis: statement of the Council of Regional Networks for Genetic Services.

Authors:  B L Therrell; W H Hannon; K A Pass; F Lorey; C Brokopp; J Eckman; M Glass; R Heidenreich; S Kinney; S Kling; G Landenburger; F J Meaney; E R McCabe; S Panny; M Schwartz; E Shapira
Journal:  Biochem Mol Med       Date:  1996-04

7.  Assessing public attitudes on the retention and use of residual newborn screening blood samples: a focus group study.

Authors:  Erin Rothwell; Rebecca Anderson; Aaron Goldenberg; Michelle H Lewis; Louisa Stark; Matthew Burbank; Bob Wong; Jeffrey R Botkin
Journal:  Soc Sci Med       Date:  2012-02-18       Impact factor: 4.634

8.  Estimation of the false-negative rate in newborn screening for congenital adrenal hyperplasia.

Authors:  Felix Votava; Dóra Török; József Kovács; Dorothea Möslinger; Sabina M Baumgartner-Parzer; János Sólyom; Zuzana Pribilincová; Tadej Battelino; Jan Lebl; Herwig Frisch; Franz Waldhauser
Journal:  Eur J Endocrinol       Date:  2005-06       Impact factor: 6.664

9.  The frequency of GJB2 and GJB6 mutations in the New York State newborn population: feasibility of genetic screening for hearing defects.

Authors:  T Fitzgerald; S Duva; H Ostrer; K Pass; C Oddoux; R Ruben; M Caggana
Journal:  Clin Genet       Date:  2004-04       Impact factor: 4.438

10.  Pilot study for utilization of dried blood spots for screening of lead, mercury and cadmium in newborns.

Authors:  Sanwat N Chaudhuri; Steven J M Butala; R Wayne Ball; Christopher T Braniff
Journal:  J Expo Sci Environ Epidemiol       Date:  2008-04-09       Impact factor: 5.563

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  25 in total

Review 1.  The promise and challenges of blood spot methylomics.

Authors:  Sreeram V Ramagopalan; Vardhman K Rakyan
Journal:  Epigenetics       Date:  2013-06-19       Impact factor: 4.528

2.  Considering consent: a structural equation modelling analysis of factors influencing decisional quality when accepting newborn screening.

Authors:  Stuart G Nicholls; Kevin W Southern
Journal:  J Inherit Metab Dis       Date:  2013-09-17       Impact factor: 4.982

Review 3.  Newborn screening for severe combined immunodeficiency and T-cell lymphopenia.

Authors:  Jennifer M Puck
Journal:  Immunol Rev       Date:  2019-01       Impact factor: 12.988

4.  Public concerns regarding the storage and secondary uses of residual newborn bloodspots: an analysis of print media, legal cases, and public engagement activities.

Authors:  Shannon Cunningham; Kieran C O'Doherty; Karine Sénécal; David Secko; Denise Avard
Journal:  J Community Genet       Date:  2014-12-23

5.  Public attitudes regarding the use of electronic health information and residual clinical tissues for research.

Authors:  Jeffrey R Botkin; Erin Rothwell; Rebecca Anderson; Louisa A Stark; Joyce Mitchell
Journal:  J Community Genet       Date:  2015-02-03

Review 6.  Emerging issues in public health genomics.

Authors:  Dana Dolinoy; Beth Tarini; J Scott Roberts
Journal:  Annu Rev Genomics Hum Genet       Date:  2014       Impact factor: 8.929

7.  'Cool! and creepy': engaging with college student stakeholders in Michigan's biobank.

Authors:  Tevah Platt; Jodyn Platt; Daniel B Thiel; Nicole Fisher; Sharon L R Kardia
Journal:  J Community Genet       Date:  2014-06-12

Review 8.  Evolving approaches to the ethical management of genomic data.

Authors:  Jean E McEwen; Joy T Boyer; Kathie Y Sun
Journal:  Trends Genet       Date:  2013-02-28       Impact factor: 11.639

9.  Biobanking Research and Human Subjects Protections: Perspectives of IRB Leaders.

Authors:  Erin Rothwell; Karen J Maschke; Jeffrey R Botkin; Aaron Goldenberg; Thomas H Murray; Suzanne M Rivera
Journal:  IRB       Date:  2015 Mar-Apr

10.  Screening of Newborns for Disorders with High Benefit-Risk Ratios Should Be Mandatory.

Authors:  Nicole Kelly; Dalia Chehayeb Makarem; Melissa P Wasserstein
Journal:  J Law Med Ethics       Date:  2016-06       Impact factor: 1.718

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