Literature DB >> 25396100

Clinical Management of Pediatric Genomic Testing.

Ingrid A Holm1.   

Abstract

As sequencing becomes integrated into clinical medicine, many complex ethical questions arise regarding the return of genomic information, especially in pediatrics. Issues center on the best interests of the child, particularly in return of information about adult-onset conditions. These include the child's future autonomous decision-making and access to knowledge about treatable conditions, the child in the family unit, and benefit to family members of learning information which could impact them personally. This article first discusses the framework for returning genomic information, and then ethical issues regarding return of results. Finally it discusses potential harms and benefits, while recognizing that little is known about what these actually are. A new era of genomic information is in its infancy; handling genomic information in a way that provides patients and their families with knowledge that is helpful without causing distress is the greatest challenge.

Entities:  

Keywords:  Genetics; ethics; exome sequencing; families; genome sequencing; incidental finding; pediatrics; primary finding; return of results; secondary finding

Year:  2014        PMID: 25396100      PMCID: PMC4226515          DOI: 10.1007/s40142-014-0052-8

Source DB:  PubMed          Journal:  Curr Genet Med Rep        ISSN: 2167-4876


  12 in total

1.  Genetic dilemmas and the child's right to an open future.

Authors:  D S Davis
Journal:  Rutgers Law J       Date:  1997

Review 2.  Predictive genetic testing in minors for late-onset conditions: a chronological and analytical review of the ethical arguments.

Authors:  Cara Mand; Lynn Gillam; Martin B Delatycki; Rony E Duncan
Journal:  J Med Ethics       Date:  2012-03-08       Impact factor: 2.903

3.  Anticipate and communicate: Ethical management of incidental and secondary findings in the clinical, research, and direct-to-consumer contexts (December 2013 report of the Presidential Commission for the Study of Bioethical Issues).

Authors:  Christine Weiner
Journal:  Am J Epidemiol       Date:  2014-08-22       Impact factor: 4.897

4.  The incidentalome: a threat to genomic medicine.

Authors:  Isaac S Kohane; Daniel R Masys; Russ B Altman
Journal:  JAMA       Date:  2006-07-12       Impact factor: 56.272

5.  Disclosing individual genetic results to research participants.

Authors:  Vardit Ravitsky; Benjamin S Wilfond
Journal:  Am J Bioeth       Date:  2006 Nov-Dec       Impact factor: 11.229

6.  Predictive genetic testing of children and the role of the best interest standard.

Authors:  Lainie Friedman Ross
Journal:  J Law Med Ethics       Date:  2013       Impact factor: 1.718

7.  Point-counterpoint. Patient autonomy and incidental findings in clinical genomics.

Authors:  Susan M Wolf; George J Annas; Sherman Elias
Journal:  Science       Date:  2013-05-16       Impact factor: 47.728

8.  Deploying whole genome sequencing in clinical practice and public health: meeting the challenge one bin at a time.

Authors:  Jonathan S Berg; Muin J Khoury; James P Evans
Journal:  Genet Med       Date:  2011-06       Impact factor: 8.822

9.  The sequence of the human genome.

Authors:  J C Venter; M D Adams; E W Myers; P W Li; R J Mural; G G Sutton; H O Smith; M Yandell; C A Evans; R A Holt; J D Gocayne; P Amanatides; R M Ballew; D H Huson; J R Wortman; Q Zhang; C D Kodira; X H Zheng; L Chen; M Skupski; G Subramanian; P D Thomas; J Zhang; G L Gabor Miklos; C Nelson; S Broder; A G Clark; J Nadeau; V A McKusick; N Zinder; A J Levine; R J Roberts; M Simon; C Slayman; M Hunkapiller; R Bolanos; A Delcher; I Dew; D Fasulo; M Flanigan; L Florea; A Halpern; S Hannenhalli; S Kravitz; S Levy; C Mobarry; K Reinert; K Remington; J Abu-Threideh; E Beasley; K Biddick; V Bonazzi; R Brandon; M Cargill; I Chandramouliswaran; R Charlab; K Chaturvedi; Z Deng; V Di Francesco; P Dunn; K Eilbeck; C Evangelista; A E Gabrielian; W Gan; W Ge; F Gong; Z Gu; P Guan; T J Heiman; M E Higgins; R R Ji; Z Ke; K A Ketchum; Z Lai; Y Lei; Z Li; J Li; Y Liang; X Lin; F Lu; G V Merkulov; N Milshina; H M Moore; A K Naik; V A Narayan; B Neelam; D Nusskern; D B Rusch; S Salzberg; W Shao; B Shue; J Sun; Z Wang; A Wang; X Wang; J Wang; M Wei; R Wides; C Xiao; C Yan; A Yao; J Ye; M Zhan; W Zhang; H Zhang; Q Zhao; L Zheng; F Zhong; W Zhong; S Zhu; S Zhao; D Gilbert; S Baumhueter; G Spier; C Carter; A Cravchik; T Woodage; F Ali; H An; A Awe; D Baldwin; H Baden; M Barnstead; I Barrow; K Beeson; D Busam; A Carver; A Center; M L Cheng; L Curry; S Danaher; L Davenport; R Desilets; S Dietz; K Dodson; L Doup; S Ferriera; N Garg; A Gluecksmann; B Hart; J Haynes; C Haynes; C Heiner; S Hladun; D Hostin; J Houck; T Howland; C Ibegwam; J Johnson; F Kalush; L Kline; S Koduru; A Love; F Mann; D May; S McCawley; T McIntosh; I McMullen; M Moy; L Moy; B Murphy; K Nelson; C Pfannkoch; E Pratts; V Puri; H Qureshi; M Reardon; R Rodriguez; Y H Rogers; D Romblad; B Ruhfel; R Scott; C Sitter; M Smallwood; E Stewart; R Strong; E Suh; R Thomas; N N Tint; S Tse; C Vech; G Wang; J Wetter; S Williams; M Williams; S Windsor; E Winn-Deen; K Wolfe; J Zaveri; K Zaveri; J F Abril; R Guigó; M J Campbell; K V Sjolander; B Karlak; A Kejariwal; H Mi; B Lazareva; T Hatton; A Narechania; K Diemer; A Muruganujan; N Guo; S Sato; V Bafna; S Istrail; R Lippert; R Schwartz; B Walenz; S Yooseph; D Allen; A Basu; J Baxendale; L Blick; M Caminha; J Carnes-Stine; P Caulk; Y H Chiang; M Coyne; C Dahlke; A Deslattes Mays; M Dombroski; M Donnelly; D Ely; S Esparham; C Fosler; H Gire; S Glanowski; K Glasser; A Glodek; M Gorokhov; K Graham; B Gropman; M Harris; J Heil; S Henderson; J Hoover; D Jennings; C Jordan; J Jordan; J Kasha; L Kagan; C Kraft; A Levitsky; M Lewis; X Liu; J Lopez; D Ma; W Majoros; J McDaniel; S Murphy; M Newman; T Nguyen; N Nguyen; M Nodell; S Pan; J Peck; M Peterson; W Rowe; R Sanders; J Scott; M Simpson; T Smith; A Sprague; T Stockwell; R Turner; E Venter; M Wang; M Wen; D Wu; M Wu; A Xia; A Zandieh; X Zhu
Journal:  Science       Date:  2001-02-16       Impact factor: 47.728

Review 10.  Recommendations for returning genomic incidental findings? We need to talk!

Authors:  Wylie Burke; Armand H Matheny Antommaria; Robin Bennett; Jeffrey Botkin; Ellen Wright Clayton; Gail E Henderson; Ingrid A Holm; Gail P Jarvik; Muin J Khoury; Bartha Maria Knoppers; Nancy A Press; Lainie Friedman Ross; Mark A Rothstein; Howard Saal; Wendy R Uhlmann; Benjamin Wilfond; Susan M Wolf; Ron Zimmern
Journal:  Genet Med       Date:  2013-08-01       Impact factor: 8.822

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  2 in total

1.  Return of Results from Research Using Newborn Screening Dried Blood Samples.

Authors:  Michelle Huckaby Lewis; Aaron J Goldenberg
Journal:  J Law Med Ethics       Date:  2015       Impact factor: 1.718

2.  Potential Role of Genomic Sequencing in the Early Diagnosis of Treatable Genetic Conditions.

Authors:  Hengameh Zahed; Teresa N Sparks; Ben Li; Adnan Alsadah; Joseph T C Shieh
Journal:  J Pediatr       Date:  2017-10       Impact factor: 4.406

  2 in total

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