Literature DB >> 23997284

From newborn screening to population health research: implementation of the Michigan BioTrust for health.

Carrie Langbo1, Janice Bach, Mary Kleyn, Frances Pouch Downes.   

Abstract

In June 2009, the Michigan Department of Community Health launched the Michigan BioTrust for Health to improve preservation and utility of residual dried blood spots from newborn screening (NBS) for biomedical research while maintaining public support and integrity of NBS. In this article, we chronicle implementation of the BioTrust and document its impact on NBS. Overall, the percentage of new parents who consent to possible future research use of their children's dried blood spots through the BioTrust has remained consistent with previous public opinion surveys. No significant increase in refusal of NBS has been observed despite increased publicity. There was, however, a slight increase in requests to destroy samples following completion of NBS, indicating readily accessible opt-out information. Given adequate training and cooperation of birthing hospital staff, as well as outreach education for parents and health-care providers, we conclude it is possible to implement a biobanking initiative without adversely impacting NBS.

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Mesh:

Year:  2013        PMID: 23997284      PMCID: PMC3743286          DOI: 10.1177/003335491312800508

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


  9 in total

1.  Public attitudes regarding the use of residual newborn screening specimens for research.

Authors:  Jeffrey R Botkin; Erin Rothwell; Rebecca Anderson; Louisa Stark; Aaron Goldenberg; Michelle Lewis; Matthew Burbank; Bob Wong
Journal:  Pediatrics       Date:  2012-01-16       Impact factor: 7.124

2.  Public support for the use of newborn screening dried blood spots in health research.

Authors:  D Duquette; A P Rafferty; C Fussman; J Gehring; S Meyer; J Bach
Journal:  Public Health Genomics       Date:  2010-12-18       Impact factor: 2.000

Review 3.  National population-based biobanks for genetic research.

Authors:  Helen Swede; Carol L Stone; Alyssa R Norwood
Journal:  Genet Med       Date:  2007-03       Impact factor: 8.822

4.  The Michigan BioTrust for Health: using dried bloodspots for research to benefit the community while respecting the individual.

Authors:  Denise Chrysler; Harry McGee; Janice Bach; Ed Goldman; Peter D Jacobson
Journal:  J Law Med Ethics       Date:  2011-03       Impact factor: 1.718

5.  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

6.  Michigan BioTrust for Health: public support for using residual dried blood spot samples for health research.

Authors:  D Duquette; C Langbo; J Bach; M Kleyn
Journal:  Public Health Genomics       Date:  2012-04-04       Impact factor: 2.000

7.  Concerns of newborn blood screening advisory committee members regarding storage and use of residual newborn screening blood spots.

Authors:  Erin W Rothwell; Rebecca A Anderson; Matthew J Burbank; Aaron J Goldenberg; Michelle Huckaby Lewis; Louisa A Stark; Bob Wong; Jeffrey R Botkin
Journal:  Am J Public Health       Date:  2011-02-17       Impact factor: 9.308

8.  Not without my permission: parents' willingness to permit use of newborn screening samples for research.

Authors:  B A Tarini; A Goldenberg; D Singer; S J Clark; A Butchart; M M Davis
Journal:  Public Health Genomics       Date:  2009-07-11       Impact factor: 2.000

9.  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

  9 in total
  5 in total

1.  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

2.  '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

3.  Testing an online, dynamic consent portal for large population biobank research.

Authors:  Daniel B Thiel; Jodyn Platt; Tevah Platt; Susan B King; Nicole Fisher; Robert Shelton; Sharon L R Kardia
Journal:  Public Health Genomics       Date:  2014-10-30       Impact factor: 2.000

4.  Engaging a state: Facebook comments on a large population biobank.

Authors:  Tevah Platt; Jodyn Platt; Daniel Thiel; Sharon L R Kardia
Journal:  J Community Genet       Date:  2017-04-05

5.  Extending the surrogacy analogy: applying the advance directive model to biobanks.

Authors:  Stephanie Solomon; Ann Mongoven
Journal:  Public Health Genomics       Date:  2014-07-25       Impact factor: 2.000

  5 in total

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