Literature DB >> 26479565

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

Benjamin S Wilfond1, Conrad V Fernandez2, Robert C Green3.   

Abstract

Secondary findings for adult-onset diseases in pediatric clinical sequencing can benefit parents or other family members. In the absence of data showing harm, it is ethically reasonable for parents to request such information, because in other types of medical decision-making, they are often given discretion unless their decisions clearly harm the child. Some parents might not want this information because it could distract them from focusing on the child's underlying condition that prompted sequencing. Collecting family impact data may improve future policy determinations.
© 2015 American Society of Law, Medicine & Ethics, Inc.

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Year:  2015        PMID: 26479565      PMCID: PMC4617182          DOI: 10.1111/jlme.12298

Source DB:  PubMed          Journal:  J Law Med Ethics        ISSN: 1073-1105            Impact factor:   1.718


  24 in total

Review 1.  Psychological impact of genetic testing for Huntington's disease: an update of the literature.

Authors:  B Meiser; S Dunn
Journal:  J Neurol Neurosurg Psychiatry       Date:  2000-11       Impact factor: 10.154

Review 2.  Genetic dilemmas and the child's right to an open future.

Authors:  D S Davis
Journal:  Hastings Cent Rep       Date:  1997 Mar-Apr       Impact factor: 2.683

3.  Predicting our future: lessons from Winnie-the-Pooh.

Authors:  Benjamin Wilfond
Journal:  Hastings Cent Rep       Date:  2012 Jul-Aug       Impact factor: 2.683

4.  From public health emergency to public health service: the implications of evolving criteria for newborn screening panels.

Authors:  Scott D Grosse; Coleen A Boyle; Aileen Kenneson; Muin J Khoury; Benjamin S Wilfond
Journal:  Pediatrics       Date:  2006-03       Impact factor: 7.124

5.  Supporting family adaptation to presymptomatic and "untreatable" conditions in an era of expanded newborn screening.

Authors:  Donald B Bailey; F Daniel Armstrong; Alex R Kemper; Debra Skinner; Steven F Warren
Journal:  J Pediatr Psychol       Date:  2008-03-30

Review 6.  Diagnostic clinical genome and exome sequencing.

Authors:  Leslie G Biesecker; Robert C Green
Journal:  N Engl J Med       Date:  2014-06-19       Impact factor: 91.245

7.  The decision to be tested for Huntington's disease.

Authors:  K A Quaid; J Brandt; S E Folstein
Journal:  JAMA       Date:  1987-06-26       Impact factor: 56.272

Review 8.  Parental refusals of medical treatment: the harm principle as threshold for state intervention.

Authors:  Douglas S Diekema
Journal:  Theor Med Bioeth       Date:  2004

9.  How behavioral economics can help to avoid 'The last mile problem' in whole genome sequencing.

Authors:  Jennifer S Blumenthal-Barby; Amy L McGuire; Robert C Green; Peter A Ubel
Journal:  Genome Med       Date:  2015-01-22       Impact factor: 11.117

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

Authors:  Lainie Friedman Ross; Laine Friedman Ross; Howard M Saal; Karen L David; Rebecca R Anderson
Journal:  Genet Med       Date:  2013-02-21       Impact factor: 8.822

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  23 in total

Review 1.  Genetic Basis for Congenital Heart Disease: Revisited: A Scientific Statement From the American Heart Association.

Authors:  Mary Ella Pierpont; Martina Brueckner; Wendy K Chung; Vidu Garg; Ronald V Lacro; Amy L McGuire; Seema Mital; James R Priest; William T Pu; Amy Roberts; Stephanie M Ware; Bruce D Gelb; Mark W Russell
Journal:  Circulation       Date:  2018-11-20       Impact factor: 29.690

2.  Newborn Sequencing in Genomic Medicine and Public Health.

Authors:  Jonathan S Berg; Pankaj B Agrawal; Donald B Bailey; Alan H Beggs; Steven E Brenner; Amy M Brower; Julie A Cakici; Ozge Ceyhan-Birsoy; Kee Chan; Flavia Chen; Robert J Currier; Dmitry Dukhovny; Robert C Green; Julie Harris-Wai; Ingrid A Holm; Brenda Iglesias; Galen Joseph; Stephen F Kingsmore; Barbara A Koenig; Pui-Yan Kwok; John Lantos; Steven J Leeder; Megan A Lewis; Amy L McGuire; Laura V Milko; Sean D Mooney; Richard B Parad; Stacey Pereira; Joshua Petrikin; Bradford C Powell; Cynthia M Powell; Jennifer M Puck; Heidi L Rehm; Neil Risch; Myra Roche; Joseph T Shieh; Narayanan Veeraraghavan; Michael S Watson; Laurel Willig; Timothy W Yu; Tiina Urv; Anastasia L Wise
Journal:  Pediatrics       Date:  2017-01-17       Impact factor: 7.124

3.  Why Patients Decline Genomic Sequencing Studies: Experiences from the CSER Consortium.

Authors:  Laura M Amendola; Jill O Robinson; Ragan Hart; Sawona Biswas; Kaitlyn Lee; Barbara A Bernhardt; Kelly East; Marian J Gilmore; Tia L Kauffman; Katie L Lewis; Myra Roche; Sarah Scollon; Julia Wynn; Carrie Blout
Journal:  J Genet Couns       Date:  2018-03-01       Impact factor: 2.537

Review 4.  Genomic medicine for kidney disease.

Authors:  Emily E Groopman; Hila Milo Rasouly; Ali G Gharavi
Journal:  Nat Rev Nephrol       Date:  2018-01-08       Impact factor: 28.314

Review 5.  Genomic medicine for undiagnosed diseases.

Authors:  Anastasia L Wise; Teri A Manolio; George A Mensah; Josh F Peterson; Dan M Roden; Cecelia Tamburro; Marc S Williams; Eric D Green
Journal:  Lancet       Date:  2019-08-05       Impact factor: 79.321

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

7.  Interpretation of Genomic Sequencing Results in Healthy and Ill Newborns: Results from the BabySeq Project.

Authors:  Ozge Ceyhan-Birsoy; Jaclyn B Murry; Kalotina Machini; Matthew S Lebo; Timothy W Yu; Shawn Fayer; Casie A Genetti; Talia S Schwartz; Pankaj B Agrawal; Richard B Parad; Ingrid A Holm; Amy L McGuire; Robert C Green; Heidi L Rehm; Alan H Beggs
Journal:  Am J Hum Genet       Date:  2019-01-03       Impact factor: 11.025

8.  Impact of Receiving Secondary Results from Genomic Research: A 12-Month Longitudinal Study.

Authors:  Julia Wynn; Josue Martinez; Jessica Bulafka; Jimmy Duong; Yuan Zhang; Codruta Chiuzan; Jain Preti; Maria L Cremona; Vaidehi Jobanputra; Abby J Fyer; Robert L Klitzman; Paul S Appelbaum; Wendy K Chung
Journal:  J Genet Couns       Date:  2017-11-22       Impact factor: 2.537

9.  Clinical Sequencing Exploratory Research Consortium: Accelerating Evidence-Based Practice of Genomic Medicine.

Authors:  Robert C Green; Katrina A B Goddard; Gail P Jarvik; Laura M Amendola; Paul S Appelbaum; Jonathan S Berg; Barbara A Bernhardt; Leslie G Biesecker; Sawona Biswas; Carrie L Blout; Kevin M Bowling; Kyle B Brothers; Wylie Burke; Charlisse F Caga-Anan; Arul M Chinnaiyan; Wendy K Chung; Ellen W Clayton; Gregory M Cooper; Kelly East; James P Evans; Stephanie M Fullerton; Levi A Garraway; Jeremy R Garrett; Stacy W Gray; Gail E Henderson; Lucia A Hindorff; Ingrid A Holm; Michelle Huckaby Lewis; Carolyn M Hutter; Pasi A Janne; Steven Joffe; David Kaufman; Bartha M Knoppers; Barbara A Koenig; Ian D Krantz; Teri A Manolio; Laurence McCullough; Jean McEwen; Amy McGuire; Donna Muzny; Richard M Myers; Deborah A Nickerson; Jeffrey Ou; Donald W Parsons; Gloria M Petersen; Sharon E Plon; Heidi L Rehm; J Scott Roberts; Dan Robinson; Joseph S Salama; Sarah Scollon; Richard R Sharp; Brian Shirts; Nancy B Spinner; Holly K Tabor; Peter Tarczy-Hornoch; David L Veenstra; Nikhil Wagle; Karen Weck; Benjamin S Wilfond; Kirk Wilhelmsen; Susan M Wolf; Julia Wynn; Joon-Ho Yu
Journal:  Am J Hum Genet       Date:  2016-05-12       Impact factor: 11.025

10.  Parental attitudes and expectations towards receiving genomic test results in healthy children.

Authors:  Alanna Kulchak Rahm; Lindsay Bailey; Kara Fultz; Audrey Fan; Janet L Williams; Adam Buchanan; F Daniel Davis; Michael F Murray; Marc S Williams
Journal:  Transl Behav Med       Date:  2018-01-29       Impact factor: 3.046

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