Literature DB >> 20445458

Effects of genetic risk information on children's psychosocial wellbeing: a systematic review of the literature.

Christopher H Wade1, Benjamin S Wilfond, Colleen M McBride.   

Abstract

PURPOSE: As advances in research have made a growing number of genetic tests available, clinicians will increasingly be faced with making decisions about when offering genetic testing services to children is appropriate. A key factor in such decisions involves determining whether knowledge of genetic health risks might have an impact on children's psychosocial wellbeing.
METHODS: We conducted a systematic review of the literature using five online databases to identify studies that assessed the impact of communicating nondiagnostic carrier or presymptomatic genetic test results to children.
RESULTS: A total of 17 articles met the inclusion criteria for this review. These studies used a wide range of methodologies to explore carrier and predictive testing. Although there was little quantitative evidence that receiving genetic test results led to a significant impact on children's psychosocial wellbeing, it was found that methodological inconsistencies, small samples, and reliance on assessments most appropriate for psychopathology make any firm conclusions about the impact of genetic testing on children premature.
CONCLUSION: Currently, there is insufficient evidence to inform a nuanced understanding of how children respond to genetic testing. This suggests a strong need for further research that uses rigorous approaches to address children's emotional states, self-perception, and social wellbeing.

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Year:  2010        PMID: 20445458     DOI: 10.1097/GIM.0b013e3181de695c

Source DB:  PubMed          Journal:  Genet Med        ISSN: 1098-3600            Impact factor:   8.822


  42 in total

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

Authors:  Benjamin S Wilfond; Conrad V Fernandez; Robert C Green
Journal:  J Law Med Ethics       Date:  2015       Impact factor: 1.718

2.  Commentary: Children and predictive genomic testing: disease prevention, research protection, and our future.

Authors:  Beth A Tarini; Kenneth P Tercyak; Benjamin S Wilfond
Journal:  J Pediatr Psychol       Date:  2011-08-04

3.  Psychosocial aspects of predictive genetic testing for acute intermittent porphyria in norwegian minors.

Authors:  Janice Andersen; Sverre Sandberg; Maalfrid Raaheim; Eva Gjengedal
Journal:  JIMD Rep       Date:  2011-06-22

4.  The association of beliefs about heredity with preventive and interpersonal behaviors in communities affected by podoconiosis in rural Ethiopia.

Authors:  Desta Ayode; Colleen M McBride; Hendrik de Heer; Emi Watanabe; Tsega Gebreyesus; Getnet Tadele; Abebayehu Tora; Gail Davey
Journal:  Am J Trop Med Hyg       Date:  2012-07-23       Impact factor: 2.345

Review 5.  Disclosure of incidental findings from next-generation sequencing in pediatric genomic research.

Authors:  Ruqayyah Abdul-Karim; Benjamin E Berkman; David Wendler; Annette Rid; Javed Khan; Tom Badgett; Sara Chandros Hull
Journal:  Pediatrics       Date:  2013-02-11       Impact factor: 7.124

6.  Prenatal Testing for Adult-Onset Conditions: the Position of the National Society of Genetic Counselors.

Authors:  Laura Hercher; Wendy R Uhlmann; Erin P Hoffman; Shanna Gustafson; Kelly M Chen
Journal:  J Genet Couns       Date:  2016-07-01       Impact factor: 2.537

Review 7.  Ethical issues in pediatric genetic testing and screening.

Authors:  Jeffrey R Botkin
Journal:  Curr Opin Pediatr       Date:  2016-12       Impact factor: 2.856

8.  An empirical assessment of the short-term impacts of a reading of Deborah Zoe Laufer's drama Informed Consent on attitudes and intentions to participate in genetic research.

Authors:  Erin Rothwell; Jeffrey R Botkin; Sydney Cheek-O'Donnell; Bob Wong; Gretchen A Case; Erin Johnson; Trent Matheson; Alena Wilson; Nicole R Robinson; Jared Rawlings; Brooke Horejsi; Ana Maria Lopez; Carrie L Byington
Journal:  AJOB Empir Bioeth       Date:  2018-04-06

Review 9.  Ethical issues in neonatal and pediatric clinical trials.

Authors:  Naomi Laventhal; Beth A Tarini; John Lantos
Journal:  Pediatr Clin North Am       Date:  2012-08-26       Impact factor: 3.278

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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