Literature DB >> 30133727

A New Era, New Strategies: Education and Communication Strategies to Manage Greater Access to Genomic Information.

Megan A Lewis, Natasha Bonhomme, Cinnamon S Bloss.   

Abstract

As next-generation genomic sequencing, including whole-genome sequencing information, becomes more common in research, clinical, and public health contexts, there is a need for comprehensive communication strategies and education approaches to prepare patients and clinicians to manage this information and make informed decisions about its use, and nowhere is that imperative more pronounced than when genomic sequencing is applied to newborns. Unfortunately, in-person counseling is unlikely to be applicable or cost-effective when parents obtain genomic risk information directly via the Internet. As a rule, communication strategies should match how people are accessing health information. Today, many people can obtain health information in a variety of settings, including through direct-to-consumer services, via websites, and through other digital channels or settings. In response to these changes, new communication strategies need to be considered. Adopting a comprehensive communication model means understanding the multiple levels of influence experienced by parents and the clinicians who serve them. In addition, applying communication-science principles can help in addressing some key challenges to effectively communicating genomic information to parents.
© 2018 The Hastings Center.

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Year:  2018        PMID: 30133727      PMCID: PMC6890375          DOI: 10.1002/hast.880

Source DB:  PubMed          Journal:  Hastings Cent Rep        ISSN: 0093-0334            Impact factor:   2.683


  19 in total

Review 1.  Ethical, legal, and social implications of genomic medicine.

Authors:  Ellen Wright Clayton
Journal:  N Engl J Med       Date:  2003-08-07       Impact factor: 91.245

2.  Using a Historical Lens to Envision the Next Generation of Genomic Translation Research.

Authors:  Colleen M McBride; Leah R Abrams; Laura M Koehly
Journal:  Public Health Genomics       Date:  2015-07-28       Impact factor: 2.000

3.  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

Review 4.  Direct-to-consumer personalized genomic testing.

Authors:  Cinnamon S Bloss; Burcu F Darst; Eric J Topol; Nicholas J Schork
Journal:  Hum Mol Genet       Date:  2011-08-09       Impact factor: 6.150

5.  Genetic Counselor Workforce Issues: a Survey of Genetic Counselors Licensed in the State of Indiana.

Authors:  Stephanie A Cohen; Megan E Tucker; Paula Delk
Journal:  J Genet Couns       Date:  2016-10-08       Impact factor: 2.537

6.  Supporting Parental Decisions About Genomic Sequencing for Newborn Screening: The NC NEXUS Decision Aid.

Authors:  Megan A Lewis; Ryan S Paquin; Myra I Roche; Robert D Furberg; Christine Rini; Jonathan S Berg; Cynthia M Powell; Donald B Bailey
Journal:  Pediatrics       Date:  2016-01       Impact factor: 7.124

7.  Advancing patient-centered pediatric care through health information exchange: update from the American Health Information Community Personalized Health Care Workgroup.

Authors:  Kristin A Brinner; Gregory J Downing
Journal:  Pediatrics       Date:  2009-01       Impact factor: 7.124

Review 8.  The Electronic Medical Records and Genomics (eMERGE) Network: past, present, and future.

Authors:  Omri Gottesman; Helena Kuivaniemi; Gerard Tromp; W Andrew Faucett; Rongling Li; Teri A Manolio; Saskia C Sanderson; Joseph Kannry; Randi Zinberg; Melissa A Basford; Murray Brilliant; David J Carey; Rex L Chisholm; Christopher G Chute; John J Connolly; David Crosslin; Joshua C Denny; Carlos J Gallego; Jonathan L Haines; Hakon Hakonarson; John Harley; Gail P Jarvik; Isaac Kohane; Iftikhar J Kullo; Eric B Larson; Catherine McCarty; Marylyn D Ritchie; Dan M Roden; Maureen E Smith; Erwin P Böttinger; Marc S Williams
Journal:  Genet Med       Date:  2013-06-06       Impact factor: 8.822

9.  Genomic newborn screening: public health policy considerations and recommendations.

Authors:  Jan M Friedman; Martina C Cornel; Aaron J Goldenberg; Karla J Lister; Karine Sénécal; Danya F Vears
Journal:  BMC Med Genomics       Date:  2017-02-21       Impact factor: 3.063

Review 10.  Improving Decision Making about Genetic Testing in the Clinic: An Overview of Effective Knowledge Translation Interventions.

Authors:  France Légaré; Hubert Robitaille; Claire Gane; Jessica Hébert; Michel Labrecque; François Rousseau
Journal:  PLoS One       Date:  2016-03-03       Impact factor: 3.240

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  1 in total

1.  The Value of Cognitive Pretesting: Improving Validity and Revealing Blind Spots through the Development of a Newborn Screening Parent Experiences Survey.

Authors:  Norma-Jean Simon; Anne Atkins; Brianne Miller; Natasha Bonhomme; Beth Tarini
Journal:  Int J Neonatal Screen       Date:  2021-07-08
  1 in total

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