Literature DB >> 25765282

Parent and public interest in whole-genome sequencing.

Daniel S Dodson1, Aaron J Goldenberg, Matthew M Davis, Dianne C Singer, Beth A Tarini.   

Abstract

OBJECTIVE: The aim of this study was to assess the baseline interest of the public in whole-genome sequencing (WGS) for oneself, parents' interest in WGS for their youngest children, and factors associated with such interest.
METHODS: A random sample of adults from a probability-based nationally representative online panel was surveyed. All participants were provided basic information about WGS and then asked about their interest in WGS for themselves. Those participants who were parents were additionally asked about their interest in WGS for their children. The order in which parents were asked about their interest in WGS for themselves and for their child was randomized. The relationship between parent/child characteristics and interest in WGS was examined.
RESULTS: The overall response rate was 62% (55% among parents). 58.6% of the total population (parents and nonparents) was interested in WGS for themselves. Similarly, 61.8% of the parents were interested in WGS for themselves and 57.8% were interested in WGS for their youngest children. Of note, 84.7% of the parents showed an identical interest level in WGS for themselves and their youngest children. Mothers as a group and parents whose youngest children had ≥2 health conditions had significantly more interest in WGS for themselves and their youngest children, while those with conservative political ideologies had considerably less.
CONCLUSIONS: While US adults have varying interest levels in WGS, parents appear to have similar interests in genome testing for themselves and their youngest children. As WGS technology becomes available in the clinic and private market, clinicians should be prepared to discuss WGS risks and benefits with their patients.
© 2015 S. Karger AG, Basel.

Entities:  

Mesh:

Year:  2015        PMID: 25765282      PMCID: PMC4406802          DOI: 10.1159/000375115

Source DB:  PubMed          Journal:  Public Health Genomics        ISSN: 1662-4246            Impact factor:   2.000


  38 in total

1.  Racial and ethnic variations in knowledge and attitudes about genetic testing.

Authors:  Eleanor Singer; Toni Antonucci; John Van Hoewyk
Journal:  Genet Test       Date:  2004

2.  Next-generation DNA sequencing, regulation, and the limits of paternalism: the next challenge.

Authors:  James P Evans; Jonathan S Berg
Journal:  JAMA       Date:  2011-12-07       Impact factor: 56.272

3.  The general public's understanding and perception of direct-to-consumer genetic test results.

Authors:  J W Leighton; K Valverde; B A Bernhardt
Journal:  Public Health Genomics       Date:  2011-06-30       Impact factor: 2.000

4.  Social networkers' attitudes toward direct-to-consumer personal genome testing.

Authors:  Amy L McGuire; Christina M Diaz; Tao Wang; Susan G Hilsenbeck
Journal:  Am J Bioeth       Date:  2009       Impact factor: 11.229

5.  The ethical hazards and programmatic challenges of genomic newborn screening.

Authors:  Aaron J Goldenberg; Richard R Sharp
Journal:  JAMA       Date:  2012-02-01       Impact factor: 56.272

6.  Rapid whole-genome sequencing for genetic disease diagnosis in neonatal intensive care units.

Authors:  Carol Jean Saunders; Neil Andrew Miller; Sarah Elizabeth Soden; Darrell Lee Dinwiddie; Aaron Noll; Noor Abu Alnadi; Nevene Andraws; Melanie LeAnn Patterson; Lisa Ann Krivohlavek; Joel Fellis; Sean Humphray; Peter Saffrey; Zoya Kingsbury; Jacqueline Claire Weir; Jason Betley; Russell James Grocock; Elliott Harrison Margulies; Emily Gwendolyn Farrow; Michael Artman; Nicole Pauline Safina; Joshua Erin Petrikin; Kevin Peter Hall; Stephen Francis Kingsmore
Journal:  Sci Transl Med       Date:  2012-10-03       Impact factor: 17.956

7.  Parents' concern about their own and their children's genetic disease risk: potential effects of family history vs genetic test results.

Authors:  Beth A Tarini; Dianne Singer; Sarah J Clark; Matthew M Davis
Journal:  Arch Pediatr Adolesc Med       Date:  2008-11

8.  Stakeholders' opinions on the implementation of pediatric whole exome sequencing: implications for informed consent.

Authors:  Brooke L Levenseller; Danielle J Soucier; Victoria A Miller; Diana Harris; Laura Conway; Barbara A Bernhardt
Journal:  J Genet Couns       Date:  2013-07-12       Impact factor: 2.537

9.  Obtaining informed consent for clinical tumor and germline exome sequencing of newly diagnosed childhood cancer patients.

Authors:  Sarah Scollon; Katie Bergstrom; Robin A Kerstein; Tao Wang; Susan G Hilsenbeck; Uma Ramamurthy; Richard A Gibbs; Christine M Eng; Murali M Chintagumpala; Stacey L Berg; Laurence B McCullough; Amy L McGuire; Sharon E Plon; D Williams Parsons
Journal:  Genome Med       Date:  2014-09-17       Impact factor: 11.117

10.  Primary care patient willingness for genetic testing for salt-sensitive hypertension: a cross sectional study.

Authors:  Masanobu Okayama; Taro Takeshima; Ryusuke Ae; Masanori Harada; Eiji Kajii
Journal:  BMC Fam Pract       Date:  2013-10-09       Impact factor: 2.497

View more
  13 in total

1.  Parents' interest in genetic testing of their offspring in multiplex epilepsy families.

Authors:  Courtney B Caminiti; Dale C Hesdorffer; Sara Shostak; Jeff Goldsmith; Shawn T Sorge; Melodie R Winawer; Jo C Phelan; Wendy K Chung; Ruth Ottman
Journal:  Epilepsia       Date:  2015-12-22       Impact factor: 5.864

2.  Public Views on Genetics and Genetic Testing: A Survey of the General Public in Belgium.

Authors:  Davit Chokoshvili; Carmen Belmans; Roxanne Poncelet; Sofie Sanders; Deborah Vaes; Danya Vears; Sandra Janssens; Isabelle Huys; Pascal Borry
Journal:  Genet Test Mol Biomarkers       Date:  2017-03

Review 3.  How does the genomic naive public perceive whole genomic testing for health purposes? A scoping review.

Authors:  Isabella A Sherburn; Keri Finlay; Stephanie Best
Journal:  Eur J Hum Genet       Date:  2022-10-19       Impact factor: 5.351

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

Authors:  Holly Etchegary; Daryl Pullman; Charlene Simmonds; Proton Rahman
Journal:  J Community Genet       Date:  2022-01-21

5.  Preferences for the provision of whole genome sequencing services among young adults.

Authors:  Christopher H Wade; Kailyn R Elliott
Journal:  PLoS One       Date:  2017-03-23       Impact factor: 3.240

6.  Attitudes of stakeholders in psychiatry towards the inclusion of children in genomic research.

Authors:  Anna Sundby; Merete Watt Boolsen; Kristoffer Sølvsten Burgdorf; Henrik Ullum; Thomas Folkmann Hansen; Ole Mors
Journal:  Hum Genomics       Date:  2018-03-05       Impact factor: 4.639

7.  Parental Perspectives on Whole Exome Sequencing in Pediatric Cancer: A Typology of Perceived Utility.

Authors:  Janet Malek; Melody J Slashinski; Jill O Robinson; Amanda M Gutierrez; D Williams Parsons; Sharon E Plon; Laurence B McCullough; Amy L McGuire
Journal:  JCO Precis Oncol       Date:  2017-05-31

8.  What are people willing to pay for whole-genome sequencing information, and who decides what they receive?

Authors:  Deborah A Marshall; Juan Marcos Gonzalez; F Reed Johnson; Karen V MacDonald; Amy Pugh; Michael P Douglas; Kathryn A Phillips
Journal:  Genet Med       Date:  2016-06-02       Impact factor: 8.822

9.  Parental preferences toward genomic sequencing for non-medically actionable conditions in children: a discrete-choice experiment.

Authors:  Megan A Lewis; Alex Stine; Ryan S Paquin; Carol Mansfield; Dallas Wood; Christine Rini; Myra I Roche; Cynthia M Powell; Jonathan S Berg; Donald B Bailey
Journal:  Genet Med       Date:  2017-08-03       Impact factor: 8.822

10.  Marking 15 years of the Genetic and Rare Diseases Information Center.

Authors:  Janine Lewis; Michelle Snyder; Henrietta Hyatt-Knorr
Journal:  Transl Sci Rare Dis       Date:  2017-05-25
View more

北京卡尤迪生物科技股份有限公司 © 2022-2023.