Literature DB >> 31654527

Decisional conflict among adolescents and parents making decisions about genomic sequencing results.

Preethi Raghuram Pillai1, Cynthia A Prows1,2, Lisa J Martin1, Melanie F Myers1.   

Abstract

Genomic testing of adolescents is increasing yet engaging them in decision-making is not routine. We assessed decisional conflict in adolescents and a parent making independent decisions about actual genomic testing results and factors that influenced their choices. We enrolled 163 dyads consisting of an adolescent (13-17 years) not selected based on a specific clinical indication and one parent. After independently choosing categories of conditions to learn for the adolescent, participants completed the validated Decisional Conflict Scale and a survey assessing factors influencing their respective choices. Adolescents had higher decisional conflict scores than parents (15.6 [IQR:4.7-25.6] vs 9.4 [IQR:1.6-21.9]; P = .0007). Adolescents with clinically significant decisional conflict were less likely to choose to learn all results than adolescents with lower decisional conflict (19.6% vs 80.4%; P < .0001) and less likely to report their choices were influenced by actionability of results (33.3% vs 18.9%; P = .044) and feeling confident they can deal with the results (71.2% vs 91.9%; P = .0005). Our findings suggest higher decisional conflict in adolescents may influence the type and amount of genomic results they wish to learn. Additional research assessing decisional conflict and factors influencing testing choices among adolescents in clinical settings are required.
© 2019 John Wiley & Sons A/S. Published by John Wiley & Sons Ltd.

Entities:  

Keywords:  adolescent; conflict (psychology); decision-making; genomics

Mesh:

Year:  2019        PMID: 31654527      PMCID: PMC8177079          DOI: 10.1111/cge.13658

Source DB:  PubMed          Journal:  Clin Genet        ISSN: 0009-9163            Impact factor:   4.438


  40 in total

1.  Genes for Good: Engaging the Public in Genetics Research via Social Media.

Authors:  Katharine Brieger; Gregory J M Zajac; Anita Pandit; Johanna R Foerster; Kevin W Li; Aubrey C Annis; Ellen M Schmidt; Chris P Clark; Karly McMorrow; Wei Zhou; Jingjing Yang; Alan M Kwong; Andrew P Boughton; Jinxi Wu; Chris Scheller; Tanvi Parikh; Alejandro de la Vega; David M Brazel; Maia Frieser; Gianna Rea-Sandin; Lars G Fritsche; Scott I Vrieze; Gonçalo R Abecasis
Journal:  Am J Hum Genet       Date:  2019-06-13       Impact factor: 11.025

Review 2.  An overview of human genetic privacy.

Authors:  Xinghua Shi; Xintao Wu
Journal:  Ann N Y Acad Sci       Date:  2016-09-14       Impact factor: 5.691

3.  Does decisional conflict differ across race and ethnicity groups? A study of parents whose children have a life-threatening illness.

Authors:  Caprice Knapp; Melanie Sberna-Hinojosa; Jacqueline Baron-Lee; Charlotte Curtis; I-Chan Huang
Journal:  J Palliat Med       Date:  2014-04-10       Impact factor: 2.947

4.  Decisional conflict in patients and their physicians: a dyadic approach to shared decision making.

Authors:  Annie LeBlanc; David A Kenny; Annette M O'Connor; France Légaré
Journal:  Med Decis Making       Date:  2009-02-04       Impact factor: 2.583

Review 5.  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

6.  The "All of Us" Research Program.

Authors:  Joshua C Denny; Joni L Rutter; David B Goldstein; Anthony Philippakis; Jordan W Smoller; Gwynne Jenkins; Eric Dishman
Journal:  N Engl J Med       Date:  2019-08-15       Impact factor: 176.079

7.  Parental decision making involvement and decisional conflict: a descriptive study.

Authors:  Laura Boland; Jennifer Kryworuchko; Anton Saarimaki; Margaret L Lawson
Journal:  BMC Pediatr       Date:  2017-06-13       Impact factor: 2.125

8.  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

9.  Reporting genomic secondary findings: ACMG members weigh in.

Authors:  Maren T Scheuner; Jane Peredo; Judith Benkendorf; Bruce Bowdish; Gerald Feldman; Lynn Fleisher; John J Mulvihill; Michael Watson; Gail E Herman; James Evans
Journal:  Genet Med       Date:  2014-11-13       Impact factor: 8.822

10.  Participant use and communication of findings from exome sequencing: a mixed-methods study.

Authors:  Katie L Lewis; Gillian W Hooker; Philip D Connors; Travis C Hyams; Martha F Wright; Samantha Caldwell; Leslie G Biesecker; Barbara B Biesecker
Journal:  Genet Med       Date:  2015-11-05       Impact factor: 8.822

View more
  2 in total

1.  Return of individual research results from genomic research: A systematic review of stakeholder perspectives.

Authors:  Danya F Vears; Joel T Minion; Stephanie J Roberts; James Cummings; Mavis Machirori; Mwenza Blell; Isabelle Budin-Ljøsne; Lorraine Cowley; Stephanie O M Dyke; Clara Gaff; Robert Green; Alison Hall; Amber L Johns; Bartha M Knoppers; Stephanie Mulrine; Christine Patch; Eva Winkler; Madeleine J Murtagh
Journal:  PLoS One       Date:  2021-11-08       Impact factor: 3.240

2.  Adapting Clinical Systems to Enable Adolescents' Genomic Choices.

Authors:  Cynthia A Prows; Keith Marsolo; Melanie F Myers; Jeremy Nix; Eric S Hall
Journal:  ACI open       Date:  2020-07
  2 in total

北京卡尤迪生物科技股份有限公司 © 2022-2023.