Literature DB >> 23429433

Technical report: Ethical and policy issues in genetic testing and screening of children.

Lainie Friedman Ross1, Laine Friedman Ross, Howard M Saal, Karen L David, Rebecca R Anderson.   

Abstract

The genetic testing and genetic screening of children are commonplace. Decisions about whether to offer genetic testing and screening should be driven by the best interest of the child. The growing literature on the psychosocial and clinical effects of such testing and screening can help inform best practices. This technical report provides ethical justification and empirical data in support of the proposed policy recommendations regarding such practices in a myriad of settings.

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Year:  2013        PMID： 23429433     DOI： 10.1038/gim.2012.176

Source DB:  PubMed          Journal:  Genet Med        ISSN： 1098-3600            Impact factor:   8.822


  157 in total

Review 1.  Potential Uses and Inherent Challenges of Using Genome-Scale Sequencing to Augment Current Newborn Screening.

Authors:  Jonathan S Berg; Cynthia M Powell
Journal:  Cold Spring Harb Perspect Med       Date:  2015-10-05       Impact factor: 6.915

2.  Disclosing Secondary Findings from Pediatric Sequencing to Families: Considering the "Benefit to Families".

Authors:  Benjamin S Wilfond; Conrad V Fernandez; Robert C Green
Journal:  J Law Med Ethics       Date:  2015       Impact factor: 1.718

3.  Returning a Research Participant's Genomic Results to Relatives: Analysis and Recommendations.

Authors:  Susan M Wolf; Rebecca Branum; Barbara A Koenig; Gloria M Petersen; Susan A Berry; Laura M Beskow; Mary B Daly; Conrad V Fernandez; Robert C Green; Bonnie S LeRoy; Noralane M Lindor; P Pearl O'Rourke; Carmen Radecki Breitkopf; Mark A Rothstein; Brian Van Ness; Benjamin S Wilfond
Journal:  J Law Med Ethics       Date:  2015       Impact factor: 1.718

4.  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 5.  Exploring the genetic basis of early-onset chronic kidney disease.

Authors:  Asaf Vivante; Friedhelm Hildebrandt
Journal:  Nat Rev Nephrol       Date:  2016-01-11       Impact factor: 28.314

6.  Returning a Genomic Result for an Adult-Onset Condition to the Parents of a Newborn: Insights From the BabySeq Project.

Authors:  Ingrid A Holm; Amy McGuire; Stacey Pereira; Heidi Rehm; Robert C Green; Alan H Beggs
Journal:  Pediatrics       Date:  2019-01       Impact factor: 7.124

Review 7.  Challenging the Current Recommendations for Carrier Testing in Children.

Authors:  Grace E VanNoy; Casie A Genetti; Amy L McGuire; Robert C Green; Alan H Beggs; Ingrid A Holm
Journal:  Pediatrics       Date:  2019-01       Impact factor: 7.124

8.  Return of genomic results to research participants: the floor, the ceiling, and the choices in between.

Authors:  Gail P Jarvik; Laura M Amendola; Jonathan S Berg; Kyle Brothers; Ellen W Clayton; Wendy Chung; Barbara J Evans; James P Evans; Stephanie M Fullerton; Carlos J Gallego; Nanibaa' A Garrison; Stacy W Gray; Ingrid A Holm; Iftikhar J Kullo; Lisa Soleymani Lehmann; Cathy McCarty; Cynthia A Prows; Heidi L Rehm; Richard R Sharp; Joseph Salama; Saskia Sanderson; Sara L Van Driest; Marc S Williams; Susan M Wolf; Wendy A Wolf; Wylie Burke
Journal:  Am J Hum Genet       Date:  2014-05-08       Impact factor: 11.025

9.  Parental Perception of Self-Empowerment in Pediatric Pharmacogenetic Testing: The Reactions of Parents to the Communication of Actual and Hypothetical CYP2D6 Test Results.

Authors:  Sarah Adelsperger; Cynthia A Prows; Melanie F Myers; Cassandra L Perry; Ariel Chandler; Ingrid A Holm; John A Lynch
Journal:  Health Commun       Date:  2016-08-30

10.  Evolution of Hereditary Breast Cancer Genetic Services: Are Changes Reflected in the Knowledge and Clinical Practices of Florida Providers?

Authors:  Deborah Cragun; Courtney Scherr; Lucia Camperlengo; Susan T Vadaparampil; Tuya Pal
Journal:  Genet Test Mol Biomarkers       Date:  2016-08-15
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