Literature DB >> 35061238

Public interest in unexpected genomic findings: a survey study identifying aspects of sequencing attitudes that influence preferences.

Holly Etchegary1, Daryl Pullman2, Charlene Simmonds3, Proton Rahman4.   

Abstract

We describe public preferences for unexpected genomic findings and explore predictors of preferences using an online survey in an Eastern Canadian province. Items measuring attitudes toward features of unexpected findings and genomic sequencing concerns were entered in logistic regression models predicting interest in unexpected findings. Very high levels of interest were observed in unexpected findings for treatable disorders and carrier results, with lesser interest in unexpected findings for non-treatable disorders and unclassified variants. Respondents who endorsed items measuring features of patient control and choice over their genomic data and testing options were 3-5 times more likely to be very interested in receiving unexpected findings. Respondents with high genomic sequencing concerns were less interested in the return of any unexpected result. Self-reported history of a genetic condition was significantly related to interest in receiving most categories of unexpected genomic information, while prior use of direct-to-consumer testing was significantly related only to interest in the return of unexpected genomic findings for disorders not currently treatable. Findings highlight the need for specific elements of information and transparency regarding the return of unexpected findings and can inform the development of patient-centered materials and return of results policies.
© 2022. The Author(s), under exclusive licence to Springer-Verlag GmbH Germany, part of Springer Nature.

Entities:  

Keywords:  Genome sequencing; Genomics; Incidental findings; Public attitudes; Survey

Year:  2022        PMID: 35061238      PMCID: PMC8941068          DOI: 10.1007/s12687-022-00577-0

Source DB:  PubMed          Journal:  J Community Genet        ISSN: 1868-310X


  33 in total

Review 1.  Factors influencing intrafamilial communication of hereditary breast and ovarian cancer genetic information.

Authors:  Gillian Nycum; Denise Avard; Bartha M Knoppers
Journal:  Eur J Hum Genet       Date:  2009-03-25       Impact factor: 4.246

2.  Public interest in whole genome sequencing and information needs: an online survey study.

Authors:  Holly Etchegary; Brenda Wilson; Proton Rahman; Charlene Simmonds; Daryl Pullman
Journal:  Per Med       Date:  2020-06-26       Impact factor: 2.512

Review 3.  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

4.  Public engagement with genomic medicine: a summary of town hall discussions.

Authors:  Holly Etchegary; Mercy Winsor; Angela Power; Charlene Simmonds
Journal:  J Community Genet       Date:  2020-08-31

5.  Public perceptions of pharmacogenetics.

Authors:  Steven C Zhang; Carleton Bruce; Michael Hayden; Michael J Rieder
Journal:  Pediatrics       Date:  2014-05       Impact factor: 7.124

6.  Attitudes of African Americans toward return of results from exome and whole genome sequencing.

Authors:  Joon-Ho Yu; Julia Crouch; Seema M Jamal; Holly K Tabor; Michael J Bamshad
Journal:  Am J Med Genet A       Date:  2013-05       Impact factor: 2.802

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

8.  Predispositional genome sequencing in healthy adults: design, participant characteristics, and early outcomes of the PeopleSeq Consortium.

Authors:  Emilie S Zoltick; Michael D Linderman; Molly A McGinniss; Erica Ramos; Madeleine P Ball; George M Church; Debra G B Leonard; Stacey Pereira; Amy L McGuire; C Thomas Caskey; Saskia C Sanderson; Eric E Schadt; Daiva E Nielsen; Scott D Crawford; Robert C Green
Journal:  Genome Med       Date:  2019-02-27       Impact factor: 11.117

9.  Clinical genome sequencing and population preferences for information about 'incidental' findings-From medically actionable genes (MAGs) to patient actionable genes (PAGs).

Authors:  Thomas Ploug; Søren Holm
Journal:  PLoS One       Date:  2017-07-03       Impact factor: 3.240

10.  Eliciting preferences on secondary findings: the Preferences Instrument for Genomic Secondary Results.

Authors:  Kyle B Brothers; Kelly M East; Whitley V Kelley; M Frances Wright; Matthew J Westbrook; Carla A Rich; Kevin M Bowling; Edward J Lose; E Martina Bebin; Shirley Simmons; John A Myers; Greg Barsh; Richard M Myers; Greg M Cooper; Jill M Pulley; Mark A Rothstein; Ellen Wright Clayton
Journal:  Genet Med       Date:  2016-08-25       Impact factor: 8.822

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