Literature DB >> 26140447

Points to Consider: Ethical, Legal, and Psychosocial Implications of Genetic Testing in Children and Adolescents.

Jeffrey R Botkin1, John W Belmont2, Jonathan S Berg3, Benjamin E Berkman4, Yvonne Bombard5, Ingrid A Holm6, Howard P Levy7, Kelly E Ormond8, Howard M Saal9, Nancy B Spinner10, Benjamin S Wilfond11, Joseph D McInerney12.   

Abstract

In 1995, the American Society of Human Genetics (ASHG) and American College of Medical Genetics and Genomics (ACMG) jointly published a statement on genetic testing in children and adolescents. In the past 20 years, much has changed in the field of genetics, including the development of powerful new technologies, new data from genetic research on children and adolescents, and substantial clinical experience. This statement represents current opinion by the ASHG on the ethical, legal, and social issues concerning genetic testing in children. These recommendations are relevant to families, clinicians, and investigators. After a brief review of the 1995 statement and major changes in genetic technologies in recent years, this statement offers points to consider on a broad range of test technologies and their applications in clinical medicine and research. Recommendations are also made for record and communication issues in this domain and for professional education.
Copyright © 2015 The American Society of Human Genetics. Published by Elsevier Inc. All rights reserved.

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Year:  2015        PMID： 26140447      PMCID： PMC4570999          DOI： 10.1016/j.ajhg.2015.05.022

Source DB:  PubMed          Journal:  Am J Hum Genet        ISSN： 0002-9297            Impact factor:   11.025


  97 in total

1.  Genetic testing in adoption. The American Society of Human Genetics Social Issues Committee and The American College of Medical Genetics Social, Ethical, and Legal Issues Committee.

Authors: 
Journal:  Am J Hum Genet       Date:  2000-03       Impact factor: 11.025

2.  The expansion of newborn screening: is reproductive benefit an appropriate pursuit?

Authors:  Yvonne Bombard; Fiona A Miller; Robin Z Hayeems; Denise Avard; Bartha M Knoppers; Martina C Cornel; Pascal Borry
Journal:  Nat Rev Genet       Date:  2009-10       Impact factor: 53.242

3.  Direct-to-consumer genetic testing: good, bad or benign?

Authors:  T Caulfield; N M Ries; P N Ray; C Shuman; B Wilson
Journal:  Clin Genet       Date:  2009-11-21       Impact factor: 4.438

Review 4.  Direct-to-consumer genomic testing: systematic review of the literature on user perspectives.

Authors:  Lesley Goldsmith; Leigh Jackson; Anita O'Connor; Heather Skirton
Journal:  Eur J Hum Genet       Date:  2012-02-15       Impact factor: 4.246

5.  A retrospective study of long-term psychosocial consequences and satisfaction after carrier testing in childhood in an autosomal recessive disease: aspartylglucosaminuria.

Authors:  O Järvinen; M Hietala; A M Aalto; M Arvio; A Uutela; P Aula; H Kääriäinen
Journal:  Clin Genet       Date:  2000-12       Impact factor: 4.438

Review 6.  Consensus statement: chromosomal microarray is a first-tier clinical diagnostic test for individuals with developmental disabilities or congenital anomalies.

Authors:  David T Miller; Margaret P Adam; Swaroop Aradhya; Leslie G Biesecker; Arthur R Brothman; Nigel P Carter; Deanna M Church; John A Crolla; Evan E Eichler; Charles J Epstein; W Andrew Faucett; Lars Feuk; Jan M Friedman; Ada Hamosh; Laird Jackson; Erin B Kaminsky; Klaas Kok; Ian D Krantz; Robert M Kuhn; Charles Lee; James M Ostell; Carla Rosenberg; Stephen W Scherer; Nancy B Spinner; Dimitri J Stavropoulos; James H Tepperberg; Erik C Thorland; Joris R Vermeesch; Darrel J Waggoner; Michael S Watson; Christa Lese Martin; David H Ledbetter
Journal:  Am J Hum Genet       Date:  2010-05-14       Impact factor: 11.025

7.  Currents in contemporary bioethics. Identifying consanguinity through routine genomic analysis: reporting requirements.

Authors:  Amy L McGuire; Melody J Wang; Frank J Probst
Journal:  J Law Med Ethics       Date:  2012       Impact factor: 1.718

Review 8.  A health-care system perspective on implementing genomic medicine: pediatric acute lymphoblastic leukemia as a paradigm.

Authors:  W E Evans; K R Crews; C-H Pui
Journal:  Clin Pharmacol Ther       Date:  2013-01-17       Impact factor: 6.875

9.  ACOG Committee Opinion No. 393, December 2007. Newborn screening.

Authors: 
Journal:  Obstet Gynecol       Date:  2007-12       Impact factor: 7.661

10.  Gatekeepers or intermediaries? The role of clinicians in commercial genomic testing.

Authors:  Michelle L McGowan; Jennifer R Fishman; Richard A Settersten; Marcie A Lambrix; Eric T Juengst
Journal:  PLoS One       Date:  2014-09-26       Impact factor: 3.240
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  129 in total

Review 1.  Human Germline Genome Editing.

Authors:  Kelly E Ormond; Douglas P Mortlock; Derek T Scholes; Yvonne Bombard; Lawrence C Brody; W Andrew Faucett; Nanibaa' A Garrison; Laura Hercher; Rosario Isasi; Anna Middleton; Kiran Musunuru; Daniel Shriner; Alice Virani; Caroline E Young
Journal:  Am J Hum Genet       Date:  2017-08-03       Impact factor: 11.025

Review 2.  Return of genetic testing results in the era of whole-genome sequencing.

Authors:  Bartha Maria Knoppers; Ma'n H Zawati; Karine Sénécal
Journal:  Nat Rev Genet       Date:  2015-08-04       Impact factor: 53.242

3.  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

4.  Rapid clinical exome sequencing in a pediatric ICU: Genetic counselor impacts and challenges.

Authors:  Sarah V Clowes Candadai; Megan C Sikes; Jenny M Thies; Amanda S Freed; James T Bennett
Journal:  J Genet Couns       Date:  2019-04       Impact factor: 2.537

Review 5.  Ethical conundrums in pediatric genomics.

Authors:  Seth J Rotz; Eric Kodish
Journal:  Hematology Am Soc Hematol Educ Program       Date:  2018-11-30

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.  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

9.  Researchers' Perspectives on Informed Consent and Ethical Review of Biobank Research in South Africa: A Cross-Sectional Study.

Authors:  Erisa Mwaka; Lyn Horn
Journal:  J Empir Res Hum Res Ethics       Date:  2019-08-05       Impact factor: 1.742

10.  The Influence of Adolescence on Parents' Perspectives of Testing and Discussing Inherited Cancer Predisposition.

Authors:  Corinna L Schultz; Melissa A Alderfer; Robert B Lindell; Zachary McClain; Kristin Zelley; Kim E Nichols; Carol A Ford
Journal:  J Genet Couns       Date:  2018-06-16       Impact factor: 2.537
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