Literature DB >> 27392285

Choices of incidental findings of individuals undergoing genome wide sequencing, a single center's experience.

C L Bishop1,2, K A Strong2,3, D P Dimmock1,2.   

Abstract

Genome wide sequencing is an emerging clinical tool that may provide information on genetic variants that are not directly related to the patient's primary disorder. These incidental findings (IFs) may include information about conditions that can be treated and may also indicate conditions for which treatments are not currently available. Data is currently limited regarding what IFs an individual would want to disclose. This study reports on 305 individual choices for return of IFs that were completed at the Medical College of Wisconsin's clinical sequencing laboratory. Individuals were given access to five categories of IFs to select from: no incidental findings, untreatable childhood disorders, treatable adulthood disorders, untreatable adulthood disorders, and carrier of a disorder. Retrospective chart review was conducted and individual choices were recorded and analyzed. The majority of individuals (76.1%) selected every IF to be reported, 14.4% wanted a subset of the options, and 9.5% did not want any IFs reported. This study contributes to the limited data that demonstrates what an individual would actually choose when undergoing genetic sequencing. Furthermore, this data supports the opinion that individuals want and utilize the ability to choose the findings reported.
© 2016 John Wiley & Sons A/S. Published by John Wiley & Sons Ltd.

Entities:  

Keywords:  decision making; genetic testing; informed choice; medical ethics; whole exome sequencing; whole genome sequencing

Mesh:

Year:  2016        PMID: 27392285     DOI: 10.1111/cge.12829

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


  12 in total

1.  Attitudes among South African university staff and students towards disclosing secondary genetic findings.

Authors:  Georgina Spies; Jolynne Mokaya; Jacqui Steadman; Nicole Schuitmaker; Martin Kidd; S M J Hemmings; Jonathan A Carr; Helena Kuivaniemi; Soraya Seedat
Journal:  J Community Genet       Date:  2020-11-20

2.  Choices for return of primary and secondary genomic research results of 790 members of families with Mendelian disease.

Authors:  Katie Fiallos; Carolyn Applegate; Debra Jh Mathews; Juli Bollinger; Amanda L Bergner; Cynthia A James
Journal:  Eur J Hum Genet       Date:  2017-03-08       Impact factor: 4.246

3.  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

4.  Perspectives and preferences regarding genomic secondary findings in underrepresented prenatal and pediatric populations: A mixed-methods approach.

Authors:  Shannon Rego; Hannah Hoban; Simon Outram; Astrid N Zamora; Flavia Chen; Nuriye Sahin-Hodoglugil; Beatriz Anguiano; Matthew Norstad; Tiffany Yip; Billie Lianoglou; Teresa N Sparks; Mary E Norton; Barbara A Koenig; Anne M Slavotinek; Sara L Ackerman
Journal:  Genet Med       Date:  2022-04-08       Impact factor: 8.864

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

Authors:  Preethi Raghuram Pillai; Cynthia A Prows; Lisa J Martin; Melanie F Myers
Journal:  Clin Genet       Date:  2019-12-02       Impact factor: 4.438

6.  Preference for secondary findings in prenatal and pediatric exome sequencing.

Authors:  Kate Swanson; Teresa N Sparks; Billie R Lianoglou; Flavia Chen; Sarah Downum; Sachi Patel; Shannon Rego; Tiffany Yip; Jessica Van Ziffle; Barbara A Koenig; Anne M Slavotinek; Mary E Norton
Journal:  Prenat Diagn       Date:  2021-06-07       Impact factor: 3.242

7.  Participant choices for return of genomic results in the eMERGE Network.

Authors:  Christin Hoell; Julia Wynn; Luke V Rasmussen; Keith Marsolo; Sharon A Aufox; Wendy K Chung; John J Connolly; Robert R Freimuth; David Kochan; Hakon Hakonarson; Margaret Harr; Ingrid A Holm; Iftikhar J Kullo; Philip E Lammers; Kathleen A Leppig; Nancy D Leslie; Melanie F Myers; Richard R Sharp; Maureen E Smith; Cynthia A Prows
Journal:  Genet Med       Date:  2020-07-16       Impact factor: 8.864

Review 8.  Opportunities and Challenges for Drug Development: Public-Private Partnerships, Adaptive Designs and Big Data.

Authors:  Oktay Yildirim; Matthias Gottwald; Peter Schüler; Martin C Michel
Journal:  Front Pharmacol       Date:  2016-12-06       Impact factor: 5.810

9.  Genomic sequencing identifies secondary findings in a cohort of parent study participants.

Authors:  Michelle L Thompson; Candice R Finnila; Kevin M Bowling; Kyle B Brothers; Matthew B Neu; Michelle D Amaral; Susan M Hiatt; Kelly M East; David E Gray; James M J Lawlor; Whitley V Kelley; Edward J Lose; Carla A Rich; Shirley Simmons; Shawn E Levy; Richard M Myers; Gregory S Barsh; E Martina Bebin; Gregory M Cooper
Journal:  Genet Med       Date:  2018-04-12       Impact factor: 8.822

10.  Preferences for Updates on General Research Results: A Survey of Participants in Genomic Research from Two Institutions.

Authors:  Casey Overby Taylor; Natalie Flaks Manov; Katherine D Crew; Chunhua Weng; John J Connolly; Christopher G Chute; Daniel E Ford; Harold Lehmann; Alanna Kulchak Rahm; Iftikhar J Kullo; Pedro J Caraballo; Ingrid A Holm; Debra Mathews
Journal:  J Pers Med       Date:  2021-05-11
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