Literature DB >> 29069655

Online Education and e-Consent for GeneScreen, a Preventive Genomic Screening Study.

R Jean Cadigan1, Rita Butterfield, Christine Rini, Margaret Waltz, Kristine J Kuczynski, Kristin Muessig, Katrina A B Goddard, Gail E Henderson.   

Abstract

BACKGROUND: Online study recruitment is increasingly popular, but we know little about the decision making that goes into joining studies in this manner. In GeneScreen, a genomic screening study that utilized online education and consent, we investigated participants' perceived ease when deciding to join and their understanding of key study features.
METHODS: Individuals were recruited via mailings that directed them to a website where they could learn more about GeneScreen, consent to participate, and complete a survey.
RESULTS: Participants found it easy to decide to join GeneScreen and had a good understanding of study features. Multiple regression analyses revealed that ease of deciding to join was related to confidence in one's genetic self-efficacy, limited concerns about genetic screening, trust in and lack of frustration using the website, and the ability to spend a limited time on the website. Understanding of study features was related to using the Internet more frequently and attaining more information about GeneScreen conditions.
CONCLUSIONS: The ease of deciding to join a genomic screening study and comprehension of its key features should be treated as different phenomena in research and practice. There is a need for a more nuanced understanding of how individuals respond to web-based consent information.
© 2017 S. Karger AG, Basel.

Entities:  

Keywords:  Electronic consent; Genetic research; Genetic screening; Informed consent

Mesh:

Year:  2017        PMID: 29069655      PMCID: PMC5698149          DOI: 10.1159/000481359

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


  27 in total

1.  Participation in genetic testing research varies by social group.

Authors:  Sharon Hensley Alford; Colleen M McBride; Robert J Reid; Eric B Larson; Andreas D Baxevanis; Lawrence C Brody
Journal:  Public Health Genomics       Date:  2010-03-18       Impact factor: 2.000

2.  Traditional and electronic informed consent for biobanking: a survey of U.S. biobanks.

Authors:  Christian M Simon; David W Klein; Helen A Schartz
Journal:  Biopreserv Biobank       Date:  2014-12       Impact factor: 2.300

3.  Risk based survey evidence supports electronic informed consent as a recruitment method for UK clinical trials.

Authors:  Natasha Stevens; Lara Edwards; Zuhur Balayah; Richard Hooper; Charles Knowles
Journal:  J Clin Epidemiol       Date:  2016-05-29       Impact factor: 6.437

4.  Analysis of informed consent document utilization in a minimal-risk genetic study.

Authors:  Karl Desch; Jun Li; Scott Kim; Naomi Laventhal; Kristen Metzger; David Siemieniak; David Ginsburg
Journal:  Ann Intern Med       Date:  2011-09-06       Impact factor: 25.391

Review 5.  Dual-processing accounts of reasoning, judgment, and social cognition.

Authors:  Jonathan St B T Evans
Journal:  Annu Rev Psychol       Date:  2008       Impact factor: 24.137

6.  Beyond "misunderstanding": written information and decisions about taking part in a genetic epidemiology study.

Authors:  Mary Dixon-Woods; Richard E Ashcroft; Clare J Jackson; Martin D Tobin; Joelle Kivits; Paul R Burton; Nilesh J Samani
Journal:  Soc Sci Med       Date:  2007-09-29       Impact factor: 4.634

7.  Engagement in a diabetes self-management website: usage patterns and generalizability of program use.

Authors:  Russell E Glasgow; Steven M Christiansen; Deanna Kurz; Diane K King; Tim Woolley; Andrew J Faber; Paul A Estabrooks; Lisa Strycker; Deborah Toobert; Jennifer Dickman
Journal:  J Med Internet Res       Date:  2011-01-25       Impact factor: 5.428

8.  Characterizing Participants in the ClinSeq Genome Sequencing Cohort as Early Adopters of a New Health Technology.

Authors:  Katie L Lewis; Paul K J Han; Gillian W Hooker; William M P Klein; Leslie G Biesecker; Barbara B Biesecker
Journal:  PLoS One       Date:  2015-07-17       Impact factor: 3.240

9.  Interactive multimedia consent for biobanking: a randomized trial.

Authors:  Christian M Simon; David W Klein; Helen A Schartz
Journal:  Genet Med       Date:  2015-04-02       Impact factor: 8.822

10.  The feasibility of online genetic testing for lung cancer susceptibility: uptake of a web-based protocol and decision outcomes.

Authors:  Suzanne C O'Neill; Della Brown White; Saskia C Sanderson; Isaac M Lipkus; Gerold Bepler; Lori A Bastian; Colleen M McBride
Journal:  Genet Med       Date:  2008-02       Impact factor: 8.822

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  10 in total

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Authors:  Stephanie A Kraft; Devan M Duenas; Hannah Lewis; Seema K Shah
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2.  Education and Consent for Population-Based DNA Screening: A Mixed-Methods Evaluation of the Early Check Newborn Screening Pilot Study.

Authors:  Holly L Peay; Angela You Gwaltney; Rebecca Moultrie; Heidi Cope; Beth Lincoln- Boyea; Katherine Ackerman Porter; Martin Duparc; Amir A Alexander; Barbara B Biesecker; Aminah Isiaq; Jennifer Check; Lisa Gehtland; Donald B Bailey; Nancy M P King
Journal:  Front Genet       Date:  2022-05-12       Impact factor: 4.772

3.  Is Real-Time ELSI Realistic?

Authors:  John M Conley; Anya E R Prince; Arlene M Davis; Jean Cadigan; Gabriel Lazaro-Munoz
Journal:  AJOB Empir Bioeth       Date:  2020-02-10

4.  Demonstrating 'respect for persons' in clinical research: findings from qualitative interviews with diverse genomics research participants.

Authors:  Stephanie A Kraft; Erin Rothwell; Seema K Shah; Devan M Duenas; Hannah Lewis; Kristin Muessig; Douglas J Opel; Katrina A B Goddard; Benjamin S Wilfond
Journal:  J Med Ethics       Date:  2020-10-06       Impact factor: 2.903

5.  Participant Reactions to a Literacy-Focused, Web-Based Informed Consent Approach for a Genomic Implementation Study.

Authors:  Stephanie A Kraft; Kathryn M Porter; Devan M Duenas; Claudia Guerra; Galen Joseph; Sandra Soo-Jin Lee; Kelly J Shipman; Jake Allen; Donna Eubanks; Tia L Kauffman; Nangel M Lindberg; Katherine Anderson; Jamilyn M Zepp; Marian J Gilmore; Kathleen F Mittendorf; Elizabeth Shuster; Kristin R Muessig; Briana Arnold; Katrina A B Goddard; Benjamin S Wilfond
Journal:  AJOB Empir Bioeth       Date:  2020-09-26

6.  GeneLiFT: A novel test to facilitate rapid screening of genetic literacy in a diverse population undergoing genetic testing.

Authors:  Hila Milo Rasouly; Nicole Cuneo; Maddalena Marasa; Natalia DeMaria; Debanjana Chatterjee; Jacqueline J Thompson; David A Fasel; Julia Wynn; Wendy K Chung; Paul Appelbaum; Chunhua Weng; Suzanne Bakken; Ali G Gharavi
Journal:  J Genet Couns       Date:  2020-12-26       Impact factor: 2.537

7.  Age and perceived risks and benefits of preventive genomic screening.

Authors:  Margaret Waltz; R Jean Cadigan; Anya E R Prince; Debra Skinner; Gail E Henderson
Journal:  Genet Med       Date:  2017-12-07       Impact factor: 8.822

8.  Assessing Parent Decisions About Child Participation in a Behavioral Health Intervention Study and Utility of Informed Consent Forms.

Authors:  Stephanie A Kraft; Kathryn M Porter; Devan M Duenas; Erin Sullivan; Maya Rowland; Brian E Saelens; Benjamin S Wilfond; Seema K Shah
Journal:  JAMA Netw Open       Date:  2020-07-01

9.  Returning negative results to individuals in a genomic screening program: lessons learned.

Authors:  Rita M Butterfield; James P Evans; Christine Rini; Kristine J Kuczynski; Margaret Waltz; R Jean Cadigan; Katrina A B Goddard; Kristin R Muessig; Gail E Henderson
Journal:  Genet Med       Date:  2018-06-06       Impact factor: 8.822

Review 10.  Electronic consenting for conducting research remotely: A review of current practice and key recommendations for using e-consenting.

Authors:  Emily Skelton; Nicholas Drey; Mary Rutherford; Susan Ayers; Christina Malamateniou
Journal:  Int J Med Inform       Date:  2020-09-13       Impact factor: 4.046

  10 in total

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