Literature DB >> 34410195

Communicating With Diverse Patients About Participating in a Biobank: A Randomized Multisite Study Comparing Electronic and Face-to-Face Informed Consent Processes.

Christian M Simon1, Kai Wang2, Laura A Shinkunas2, Daniel T Stein3, Paul Meissner3, Maureen Smith4, Rebecca Pentz5, David W Klein2.   

Abstract

Some individuals' understanding of informed consent (IC) information may improve with electronic delivery, but others may benefit from face-to-face (F2F). This randomized, multisite study explores how individuals from diverse backgrounds understand electronic IC documents versus F2F, their confidence in understanding, and enrollment in research. A total of 501 patients at two U.S. biobanks with diverse populations participated. There were no overall differences between electronic and F2F understanding, but F2F predicted higher confidence in understanding and enrollment. Ethnicity and a higher educational level predicted higher understanding and confidence. Study findings suggest that electronic consent may lead to better understanding for non-Hispanic patients of higher socioeconomic status. F2F processes may lead to better understanding and higher enrollment of patients from Hispanic and lower socioeconomic levels. Researchers should carefully consider how they implement electronic IC processes and whether to maintain an F2F process to better address the needs and limitations of some populations.

Entities:  

Keywords:  biobanking; electronic; informed consent; interactive; multimedia

Mesh:

Year:  2021        PMID: 34410195      PMCID: PMC8712348          DOI: 10.1177/15562646211038819

Source DB:  PubMed          Journal:  J Empir Res Hum Res Ethics        ISSN: 1556-2646            Impact factor:   1.742


  74 in total

1.  Lessons Learned Recruiting Minority Participants for Research in Urban Community Health Centers.

Authors:  Elizabeth Fam; Jeanne M Ferrante
Journal:  J Natl Med Assoc       Date:  2017-07-13       Impact factor: 1.798

2.  Socioeconomic status in health research: one size does not fit all.

Authors:  Paula A Braveman; Catherine Cubbin; Susan Egerter; Sekai Chideya; Kristen S Marchi; Marilyn Metzler; Samuel Posner
Journal:  JAMA       Date:  2005-12-14       Impact factor: 56.272

Review 3.  Barriers to recruiting underrepresented populations to cancer clinical trials: a systematic review.

Authors:  Jean G Ford; Mollie W Howerton; Gabriel Y Lai; Tiffany L Gary; Shari Bolen; M Chris Gibbons; Jon Tilburt; Charles Baffi; Teerath Peter Tanpitukpongse; Renee F Wilson; Neil R Powe; Eric B Bass
Journal:  Cancer       Date:  2008-01-15       Impact factor: 6.860

4.  Participants' Accounts on Their Decision to Join a Cohort Study With an Attached Biobank: A Qualitative Content Analysis Study Within Two German Studies.

Authors:  Hélène Nobile; Manuela M Bergmann; Jennifer Moldenhauer; Pascal Borry
Journal:  J Empir Res Hum Res Ethics       Date:  2016-07-04       Impact factor: 1.742

5.  Assessing the understanding of biobank participants.

Authors:  K E Ormond; A L Cirino; I B Helenowski; R L Chisholm; W A Wolf
Journal:  Am J Med Genet A       Date:  2009-02       Impact factor: 2.802

6.  An Evaluation of Clinical Trial Multimedia to Support Hispanic Cancer Patients' Informational and Decision-Making Needs.

Authors:  Soroya Julian McFarlane; Susan E Morgan; Aurora Occa; Wei Peng
Journal:  J Cancer Educ       Date:  2021-02       Impact factor: 2.037

7.  Attitudes of publics who are unwilling to donate DNA data for research.

Authors:  Anna Middleton; Richard Milne; Adrian Thorogood; Erika Kleiderman; Emilia Niemiec; Barbara Prainsack; Lauren Farley; Paul Bevan; Claire Steed; James Smith; Danya Vears; Jerome Atutornu; Heidi C Howard; Katherine I Morley
Journal:  Eur J Med Genet       Date:  2018-11-23       Impact factor: 2.708

8.  Implementation of Electronic Informed Consent in Biomedical Research and Stakeholders' Perspectives: Systematic Review.

Authors:  Evelien De Sutter; Drieda Zaçe; Stefania Boccia; Maria Luisa Di Pietro; David Geerts; Pascal Borry; Isabelle Huys
Journal:  J Med Internet Res       Date:  2020-10-08       Impact factor: 5.428

9.  Characterizing biobank organizations in the U.S.: results from a national survey.

Authors:  Gail E Henderson; R Jean Cadigan; Teresa P Edwards; Ian Conlon; Anders G Nelson; James P Evans; Arlene M Davis; Catherine Zimmer; Bryan J Weiner
Journal:  Genome Med       Date:  2013-01-25       Impact factor: 11.117

Review 10.  A review of approaches to improve participation of culturally and linguistically diverse populations in clinical trials.

Authors:  Jo-Anne Hughson; Robyn Woodward-Kron; Anna Parker; John Hajek; Agnese Bresin; Ute Knoch; Tuong Phan; David Story
Journal:  Trials       Date:  2016-05-26       Impact factor: 2.279

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