Literature DB >> 36257982

How does the genomic naive public perceive whole genomic testing for health purposes? A scoping review.

Isabella A Sherburn1, Keri Finlay1, Stephanie Best2,3,4,5.   

Abstract

The benefits of genomic testing are primarily reported in rare disease, cancer diagnosis and disease management. However, as research into its application in common, more complex conditions grows, as well as the increased prevalence of carrier screening programs, the genomic naive public is more likely to be offered testing in future. To promote social acceptability and ethical application of this technology, it is essential that public perceptions of genomics are considered. Previous studies, however, have primarily focussed on the views of those with genetic conditions or those undergoing genetic testing. The aim of this scoping review is to investigate the genomic naive public's perceptions of clinical genomics and clinical genomic testing. Embase, MEDLINE and PubMed databases were searched, with a total of 3460 articles identified. Data analysis was organised according to the nonadoption, abandonment, scale-up, spread, and sustainability (NASSS) framework. Sixteen full-text articles were included in the final analysis. Most of the studies used questionnaires to determine attitudes of the public toward clinical genomics (n = 12). Public perceptions were found to underpin technology (Domain 2), value proposition (Domain 3), the adopter system (Domain 4) and the wider context (Domain 6) of the NASSS framework, highlighting its importance when considering implementation of an innovative technology such as genomic testing. Our study shows public perceptions are diverse, and highlights the need for more studies on the views of underrepresented groups and the impact of cultural contexts on perceptions.
© 2022. The Author(s).

Entities:  

Year:  2022        PMID: 36257982     DOI: 10.1038/s41431-022-01208-5

Source DB:  PubMed          Journal:  Eur J Hum Genet        ISSN: 1018-4813            Impact factor:   5.351


  49 in total

1.  Integrating Genomics into Healthcare: A Global Responsibility.

Authors:  Zornitza Stark; Lena Dolman; Teri A Manolio; Brad Ozenberger; Sue L Hill; Mark J Caulfied; Yves Levy; David Glazer; Julia Wilson; Mark Lawler; Tiffany Boughtwood; Jeffrey Braithwaite; Peter Goodhand; Ewan Birney; Kathryn N North
Journal:  Am J Hum Genet       Date:  2019-01-03       Impact factor: 11.025

2.  'Information is information': a public perspective on incidental findings in clinical and research genome-based testing.

Authors:  S Daack-Hirsch; M Driessnack; A Hanish; V A Johnson; L L Shah; C M Simon; J K Williams
Journal:  Clin Genet       Date:  2013-05-03       Impact factor: 4.438

3.  Adolescents' preferences regarding disclosure of incidental findings in genomic sequencing that are not medically actionable in childhood.

Authors:  Sophia B Hufnagel; Lisa J Martin; Amy Cassedy; Robert J Hopkin; Armand H Matheny Antommaria
Journal:  Am J Med Genet A       Date:  2016-05-05       Impact factor: 2.802

Review 4.  Secondary findings from whole-exome/genome sequencing evaluating stakeholder perspectives. A review of the literature.

Authors:  J Delanne; S Nambot; A Chassagne; O Putois; A Pelissier; C Peyron; E Gautier; J Thevenon; E Cretin; A L Bruel; V Goussot; F Ghiringhelli; R Boidot; F Tran Mau-Them; C Philippe; A Vitobello; L Demougeot; C Vernin; A S Lapointe; M Bardou; M Luu; C Binquet; C Lejeune; L Joly; C Juif; A Baurand; C Sawka; G Bertolone; Y Duffourd; D Sanlaville; P Pujol; D Geneviève; F Houdayer; C Thauvin-Robinet; L Faivre
Journal:  Eur J Med Genet       Date:  2018-08-28       Impact factor: 2.708

5.  Giving adolescents a voice: the types of genetic information adolescents choose to learn and why.

Authors:  Josie Pervola; Melanie F Myers; Michelle L McGowan; Cynthia A Prows
Journal:  Genet Med       Date:  2018-10-29       Impact factor: 8.822

6.  Noninvasive Prenatal Whole Genome Sequencing: Pregnant Women's Views and Preferences.

Authors:  Haley K Sullivan; Michelle Bayefsky; Paul G Wakim; Kathi Huddleston; Barbara B Biesecker; Sara Chandros Hull; Benjamin E Berkman
Journal:  Obstet Gynecol       Date:  2019-03       Impact factor: 7.623

7.  Genomic newborn screening: public health policy considerations and recommendations.

Authors:  Jan M Friedman; Martina C Cornel; Aaron J Goldenberg; Karla J Lister; Karine Sénécal; Danya F Vears
Journal:  BMC Med Genomics       Date:  2017-02-21       Impact factor: 3.063

8.  Incidental inequity.

Authors:  Kristen J Nowak; Alicia Bauskis; Hugh J Dawkins; Gareth Baynam
Journal:  Eur J Hum Genet       Date:  2018-02-15       Impact factor: 4.246

Review 9.  The evolving landscape of expanded carrier screening: challenges and opportunities.

Authors:  Stephanie A Kraft; Devan Duenas; Benjamin S Wilfond; Katrina A B Goddard
Journal:  Genet Med       Date:  2018-09-24       Impact factor: 8.822

10.  Principles of Genomic Newborn Screening Programs: A Systematic Review.

Authors:  Lilian Downie; Jane Halliday; Sharon Lewis; David J Amor
Journal:  JAMA Netw Open       Date:  2021-07-01
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