Literature DB >> 22559326

Ethical issues with newborn screening in the genomics era.

Beth A Tarini1, Aaron J Goldenberg.   

Abstract

Continued technological advances have made the prospect of routine whole-genome sequencing (WGS) imminent. To date, much of the discussion about WGS has focused on its application and use in clinical medicine. Relatively little attention has been paid to the potential integration of WGS into newborn screening programs. Given the structure and scope of these programs, it is possible that the early applications of WGS will occur in state-run newborn screening programs. Assessment of the pressing ethical issues currently facing the newborn screening community will provide insight into the challenges that lie ahead in the genomics era.

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Year:  2012        PMID: 22559326      PMCID: PMC3625041          DOI: 10.1146/annurev-genom-090711-163741

Source DB:  PubMed          Journal:  Annu Rev Genomics Hum Genet        ISSN: 1527-8204            Impact factor:   8.929


  57 in total

1.  Child health providers' precautionary discussion of emotions during communication about results of newborn genetic screening.

Authors:  Michael H Farrell; Jodi Speiser; Lindsay Deuster; Stephanie Christopher
Journal:  Arch Pediatr Adolesc Med       Date:  2012-01

2.  Informing parents about newborn screening.

Authors:  Alex R Kemper; Kathryn E Fant; Sarah J Clark
Journal:  Public Health Nurs       Date:  2005 Jul-Aug       Impact factor: 1.462

3.  Content of communication by pediatric residents after newborn genetic screening.

Authors:  Michael H Farrell; Alison La Pean; Lynnea Ladouceur
Journal:  Pediatrics       Date:  2005-12       Impact factor: 7.124

4.  State newborn screening in the tandem mass spectrometry era: more tests, more false-positive results.

Authors:  Beth A Tarini; Dimitri A Christakis; H Gilbert Welch
Journal:  Pediatrics       Date:  2006-08       Impact factor: 7.124

5.  Financing state newborn screening programs: sources and uses of funds.

Authors:  Kay Johnson; Michele A Lloyd-Puryear; Marie Y Mann; Lauren Raskin Ramos; Bradford L Therrell
Journal:  Pediatrics       Date:  2006-05       Impact factor: 7.124

6.  Newborn screening program practices in the United States: notification, research, and consent.

Authors:  Kenneth D Mandl; Shlomit Feit; Cecilia Larson; Isaac S Kohane
Journal:  Pediatrics       Date:  2002-02       Impact factor: 7.124

7.  Genetic counseling and risk communication services of newborn screening programs.

Authors:  M Farrell; L Certain; P Farrell
Journal:  Arch Pediatr Adolesc Med       Date:  2001-02

8.  Long-term follow-up data collection and use in state newborn screening programs.

Authors:  Timothy Hoff; Maria Ayoob; Bradford L Therrell
Journal:  Arch Pediatr Adolesc Med       Date:  2007-10

9.  Examination of the communication practices between state newborn screening programs and the medical home.

Authors:  Sunnah Kim; Michele A Lloyd-Puryear; Thomas F Tonniges
Journal:  Pediatrics       Date:  2003-02       Impact factor: 7.124

10.  Medical foods: inborn errors of metabolism and the reimbursement dilemma.

Authors:  Meredith A Weaver; Alissa Johnson; Rani H Singh; William R Wilcox; Michele A Lloyd-Puryear; Michael S Watson
Journal:  Genet Med       Date:  2010-06       Impact factor: 8.822

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  35 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.  Next generation sequencing for newborn screening: are we there yet?

Authors:  Eitan Friedman
Journal:  Genet Res (Camb)       Date:  2015-09-22       Impact factor: 1.588

3.  Challenges of using next generation sequencing in newborn screening.

Authors:  Eyal Reinstein
Journal:  Genet Res (Camb)       Date:  2015-11-02       Impact factor: 1.588

4.  Parental Views on Expanded Newborn Screening Using Whole-Genome Sequencing.

Authors:  Galen Joseph; Flavia Chen; Julie Harris-Wai; Jennifer M Puck; Charlotte Young; Barbara A Koenig
Journal:  Pediatrics       Date:  2016-01       Impact factor: 7.124

Review 5.  Newborn screening and changing face of inborn errors of metabolism in the United States.

Authors:  Shibani Kanungo; Dilip R Patel; Mekala Neelakantan; Brinda Ryali
Journal:  Ann Transl Med       Date:  2018-12

6.  Ethical, Legal, and Social Issues (ELSI) in Clinical Genetics Research.

Authors:  Daryl Pullman; Holly Etchegary
Journal:  Methods Mol Biol       Date:  2021

Review 7.  Precisely Where Are We Going? Charting the New Terrain of Precision Prevention.

Authors:  Karen M Meagher; Michelle L McGowan; Richard A Settersten; Jennifer R Fishman; Eric T Juengst
Journal:  Annu Rev Genomics Hum Genet       Date:  2017-04-24       Impact factor: 8.929

8.  Applying Genomic Analysis to Newborn Screening.

Authors:  B D Solomon; D E Pineda-Alvarez; K A Bear; J C Mullikin; J P Evans
Journal:  Mol Syndromol       Date:  2012-07-25

9.  Mapping the Ethics of Translational Genomics: Situating Return of Results and Navigating the Research-Clinical Divide.

Authors:  Susan M Wolf; Wylie Burke; Barbara A Koenig
Journal:  J Law Med Ethics       Date:  2015       Impact factor: 1.718

10.  Perceived Benefits, Risks, and Utility of Newborn Genomic Sequencing in the BabySeq Project.

Authors:  Stacey Pereira; Jill Oliver Robinson; Amanda M Gutierrez; Devan K Petersen; Rebecca L Hsu; Caroline H Lee; Talia S Schwartz; Ingrid A Holm; Alan H Beggs; Robert C Green; Amy L McGuire
Journal:  Pediatrics       Date:  2019-01       Impact factor: 7.124

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