Literature DB >> 19685282

Are guidelines for genetic testing of children necessary?

Angela Fenwick1.   

Abstract

There is now a plethora of guidance on the genetic testing of children. This paper explores the recommendation that childhood testing for adult on-set conditions should be delayed until the child can make up their own mind. It analyses the underpinning arguments used to support this position and asks whether, given some of the problems with these, the guidelines are really necessary.

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Year:  2009        PMID： 19685282     DOI： 10.1007/s10689-009-9278-0

Source DB:  PubMed          Journal:  Fam Cancer        ISSN： 1389-9600            Impact factor:   2.375


  11 in total

Review 1.  Genetic information: a joint account?

Authors:  Michael Parker; Anneke M Lucassen
Journal:  BMJ       Date:  2004-07-17

2.  Genetic testing of children for adult-onset diseases: is testing in the child's best interests?

Authors:  Mary Kay Pelias
Journal:  Mt Sinai J Med       Date:  2006-05

3.  From genetics to genomics: ethics, policy, and parental decision-making.

Authors:  Benjamin Wilfond; Lainie Friedman Ross
Journal:  J Pediatr Psychol       Date:  2008-07-22

Review 4.  Presymptomatic and predictive genetic testing in minors: a systematic review of guidelines and position papers.

Authors:  P Borry; L Stultiens; H Nys; J-J Cassiman; K Dierickx
Journal:  Clin Genet       Date:  2006-11       Impact factor: 4.438

5.  The genetic testing of children. Working Party of the Clinical Genetics Society (UK)

Authors:  A Clarke
Journal:  J Med Genet       Date:  1994-10       Impact factor: 6.318

6.  Is there a case in favour of predictive genetic testing in young children?

Authors:  S Robertson; J Savulescu
Journal:  Bioethics       Date:  2001-02       Impact factor: 1.898

7.  An international survey of predictive genetic testing in children for adult onset conditions.

Authors:  Rony E Duncan; Julian Savulescu; Lynn Gillam; Robert Williamson; Martin B Delatycki
Journal:  Genet Med       Date:  2005 Jul-Aug       Impact factor: 8.822

8.  "Family matters": a conceptual framework for genetic testing in children.

Authors:  Allyn McConkie-Rosell; Gail A Spiridigliozzi
Journal:  J Genet Couns       Date:  2004-02       Impact factor: 2.537

9.  Predictive genetic testing of children for adult-onset diseases and psychological harm.

Authors:  P J Malpas
Journal:  J Med Ethics       Date:  2008-04       Impact factor: 2.903

Review 10.  Ignorance, information and autonomy.

Authors:  J Harris; K Keywood
Journal:  Theor Med Bioeth       Date:  2001-09
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  10 in total

1.  Predictive genetic testing in children: where are we now? An overview and a UK perspective.

Authors:  Anneke Lucassen; Jonathan Montgomery
Journal:  Fam Cancer       Date:  2010-03       Impact factor: 2.375

2.  When parents disclose BRCA1/2 test results: their communication and perceptions of offspring response.

Authors:  Angela R Bradbury; Linda Patrick-Miller; Brian L Egleston; Olufunmilayo I Olopade; Mary B Daly; Cynthia W Moore; Colleen B Sands; Helen Schmidheiser; Preethi K Kondamudi; Maia Feigon; Comfort N Ibe; Christopher K Daugherty
Journal:  Cancer       Date:  2012-01-09       Impact factor: 6.860

3.  "Both Sides of the Wheelchair": The Views of Individuals with, and Parents of Individuals with Friedreich Ataxia Regarding Pre-symptomatic Testing of Minors.

Authors:  Georgia C Lowe; Louise A Corben; Rony E Duncan; Grace Yoon; Martin B Delatycki
Journal:  J Genet Couns       Date:  2015-01-17       Impact factor: 2.537

4.  A qualitative study to explore how professionals in the United Kingdom make decisions to test children for a sickle cell carrier status.

Authors:  Melissa Noke; Sarah Peters; Alison Wearden; Fiona Ulph
Journal:  Eur J Hum Genet       Date:  2015-05-27       Impact factor: 4.246

5.  Sharing information about domestic violence and abuse in healthcare: an analysis of English guidance and recommendations for good practice.

Authors:  Sandi Dheensa; Gene Feder
Journal:  BMJ Open       Date:  2022-06-16       Impact factor: 3.006

Review 6.  Genomic Testing in The Paediatric Population: Ethical Considerations in Light of Recent Policy Statements.

Authors:  Ainsley J Newson; Lisa Schonstein
Journal:  Mol Diagn Ther       Date:  2016-10       Impact factor: 4.074

7.  Approaching confidentiality at a familial level in genomic medicine: a focus group study with healthcare professionals.

Authors:  Sandi Dheensa; Angela Fenwick; Anneke Lucassen
Journal:  BMJ Open       Date:  2017-02-03       Impact factor: 2.692

8.  Rethinking the "open future" argument against predictive genetic testing of children.

Authors:  Jeremy R Garrett; John D Lantos; Leslie G Biesecker; Janet E Childerhose; Wendy K Chung; Ingrid A Holm; Barbara A Koenig; Jean E McEwen; Benjamin S Wilfond; Kyle Brothers
Journal:  Genet Med       Date:  2019-03-21       Impact factor: 8.822

9.  Genetic testing of children for predisposition to mood disorders: anticipating the clinical issues.

Authors:  Jessica A Erickson; Lili Kuzmich; Kelly E Ormond; Erynn Gordon; Michael F Christman; Mildred K Cho; Douglas F Levinson
Journal:  J Genet Couns       Date:  2014-03-22       Impact factor: 2.537

10.  Predictive Genetic Testing of Children for Adult-Onset Conditions: Negotiating Requests with Parents.

Authors:  Angela Fenwick; Mirjam Plantinga; Sandi Dheensa; Anneke Lucassen
Journal:  J Genet Couns       Date:  2016-09-28       Impact factor: 2.537
  10 in total

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