Literature DB >> 23136040

Research results: preserving newborn blood samples.

Michelle Huckaby Lewis1, Michael E Scheurer, Robert C Green, Amy L McGuire.   

Abstract

Retention and use, without explicit parental permission, of residual dried blood samples from newborn screening has generated public controversy over concerns about violations of family privacy rights and loss of parental autonomy. The public debate about this issue has included little discussion about the destruction of a potentially valuable public resource that can be used for research that may yield improvements in public health. The research community must advocate for policies and infrastructure that promote retention of residual dried blood samples and their use in biomedical research.

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Year:  2012        PMID: 23136040      PMCID: PMC3763707          DOI: 10.1126/scitranslmed.3004474

Source DB:  PubMed          Journal:  Sci Transl Med        ISSN: 1946-6234            Impact factor:   17.956


  7 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

2.  Storage and use of residual dried blood spots from state newborn screening programs.

Authors:  Richard S Olney; Cynthia A Moore; Jelili A Ojodu; Mary Lou Lindegren; W Harry Hannon
Journal:  J Pediatr       Date:  2006-05       Impact factor: 4.406

Review 3.  Molecular biomarkers for the study of childhood leukemia.

Authors:  Martyn T Smith; Cliona M McHale; Joseph L Wiemels; Luoping Zhang; John K Wiencke; Shichun Zheng; Laura Gunn; Christine F Skibola; Xiaomei Ma; Patricia A Buffler
Journal:  Toxicol Appl Pharmacol       Date:  2005-08-07       Impact factor: 4.219

4.  State laws regarding the retention and use of residual newborn screening blood samples.

Authors:  Michelle H Lewis; Aaron Goldenberg; Rebecca Anderson; Erin Rothwell; Jeffrey Botkin
Journal:  Pediatrics       Date:  2011-03-28       Impact factor: 7.124

5.  Feasibility of neonatal dried blood spot retrieval amid evolving state policies (2009-2010): a Children's Oncology Group study.

Authors:  Amy M Linabery; Megan E Slater; Logan G Spector; Andrew F Olshan; Susan K Stork; Michelle A Roesler; Gregory H Reaman; Julie A Ross
Journal:  Paediatr Perinat Epidemiol       Date:  2011-08-10       Impact factor: 3.980

Review 6.  Current and future applications of dried blood spots in viral disease management.

Authors:  Ingrid J M Snijdewind; Jeroen J A van Kampen; Pieter L A Fraaij; Marchina E van der Ende; Albert D M E Osterhaus; Rob A Gruters
Journal:  Antiviral Res       Date:  2012-01-05       Impact factor: 5.970

7.  Committee report: Considerations and recommendations for national guidance regarding the retention and use of residual dried blood spot specimens after newborn screening.

Authors:  Bradford L Therrell; W Harry Hannon; Donald B Bailey; Edward B Goldman; Jana Monaco; Bent Norgaard-Pedersen; Sharon F Terry; Alissa Johnson; R Rodney Howell
Journal:  Genet Med       Date:  2011-07       Impact factor: 8.822

  7 in total
  8 in total

1.  Return of Results from Research Using Newborn Screening Dried Blood Samples.

Authors:  Michelle Huckaby Lewis; Aaron J Goldenberg
Journal:  J Law Med Ethics       Date:  2015       Impact factor: 1.718

2.  Whole-Genome Screening of Newborns? The Constitutional Boundaries of State Newborn Screening Programs.

Authors:  Jaime S King; Monica E Smith
Journal:  Pediatrics       Date:  2016-01       Impact factor: 7.124

Review 3.  The Human Genome Project, and recent advances in personalized genomics.

Authors:  Brenda J Wilson; Stuart G Nicholls
Journal:  Risk Manag Healthc Policy       Date:  2015-02-16

4.  The moral concerns of biobank donors: the effect of non-welfare interests on willingness to donate.

Authors:  Raymond G De Vries; Tom Tomlinson; H Myra Kim; Chris D Krenz; Kerry A Ryan; Nicole Lehpamer; Scott Y H Kim
Journal:  Life Sci Soc Policy       Date:  2016-03-11

5.  The ethics of conducting molecular autopsies in cases of sudden death in the young.

Authors:  Amy L McGuire; Quianta Moore; Mary Majumder; Magdalena Walkiewicz; Christine M Eng; John W Belmont; Salma Nassef; Sandra Darilek; Katie Rutherford; Stacey Pereira; Steven E Scherer; V Reid Sutton; Dwayne Wolf; Richard A Gibbs; Roger Kahn; Luis A Sanchez
Journal:  Genome Res       Date:  2016-07-13       Impact factor: 9.043

6.  Confirmation of Cause of Death Via Comprehensive Autopsy and Whole Exome Molecular Sequencing in People With Epilepsy and Sudden Unexpected Death.

Authors:  C Anwar A Chahal; David J Tester; Ahmed U Fayyaz; Keerthi Jaliparthy; Nadeem A Khan; Dongmei Lu; Mariha Khan; Aradhana Sahoo; Aiswarya Rajendran; Jennifer A Knight; Michael A Simpson; Elijah R Behr; Elson L So; Erik K St Louis; R Ross Reichard; William D Edwards; Michael J Ackerman; Virend K Somers
Journal:  J Am Heart Assoc       Date:  2021-11-24       Impact factor: 6.106

7.  "You hoped we would sleep walk into accepting the collection of our data": controversies surrounding the UK care.data scheme and their wider relevance for biomedical research.

Authors:  Sigrid Sterckx; Vojin Rakic; Julian Cockbain; Pascal Borry
Journal:  Med Health Care Philos       Date:  2016-06

8.  Utilization of archived neonatal dried blood spots for genome-wide genotyping.

Authors:  Pagna Sok; Philip J Lupo; Melissa A Richard; Karen R Rabin; Erik A Ehli; Noah A Kallsen; Gareth E Davies; Michael E Scheurer; Austin L Brown
Journal:  PLoS One       Date:  2020-02-21       Impact factor: 3.240

  8 in total

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