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Two Methods of Obtaining Informed Consent in a Genetic Epidemiological Study

Effects on Understanding

Bibliographic Data

ID12807485
AuthorsKenji Matsui (0000-0001-9390-2959, The University of Tokyo, corresponding author), Reidar K Lie (0000-0002-5734-5777, National Institutes of Health), Yoshikuni Kita (0000-0002-2366-1106, Shiga University of Medical Science)
Year2007
Volume2
Issue3
Pages39-48
Publication date2007-09-01
Open AccessYes
TypeARTICLE
VenueJournal of Empirical Research on Human Research Ethics (JOURNAL)
Journal identifiersISSN: 1556-2646 • E-ISSN: 1556-2654
PublisherSAGE Publishing (PUBLISHER • US)
DOI10.1525/jer.2007.2.3.39
PMID19385850
OpenAlexW2010408174
LanguageEN
Citations received2
References cited21

THIS STUDY EVALUATED THE EFFECT ON participant understanding and participation rates of two different approaches to obtaining informed consent, using 2,192 actual research subjects in a genetic cohort study. One group received the routine approach consisting of written materials and an oral explanation. The other group received a more intense approach consisting of educational lectures and group meetings in addition to the routine approach. Subjects in the intense approach group were relatively more likely to read some or all of the explanatory material. Those in the intense group who did not read the material were more likely than those in the routine group to express uncertainty about their understanding of the research. Those in the intense group who read the material perceived that they had a higher level of understanding of the research and this was associated with a higher frequency of volunteering to participate. In contrast, subjects in the routine group were less likely to read the written material, but ironically more likely to assume that they understood what the research was about. These rather paradoxical findings raised questions about what motivates potential research subjects to become sufficiently engaged to seek actual understanding of the research before volunteering

Alternative medicine · Biobank · Bioinformatics · Cohort study · Family medicine · Informed consent · Medical education · Pathology · Psychiatry · Research ethics · Applied Psychology · Clinical Psychology · Ethics in Clinical Research · Ethics in medical practice · Medicine · Patient-Provider Communication in Healthcare · Psychology · Social Psychology

  • Residents’ awareness and attitudes about an ongoing community-based genome cohort study in Nagahama, Japan

    Open Access•Keiko Miyamoto, Κ Miyamoto et al.•Public Understanding of Science•2015

  • Are We Misjudging How Well Informed Consent Forms are Read

    Open Access•Louise‐Anne McNutt, Eve Waltermaurer et al.•Journal of Empirical Research on…•2008

  • Interventions to Improve Research Participants' Understanding in Informed Consent for Research

    James Flory, Ezekiel J Emanuel et al.•JAMA•2004

  • Educating patients with limited literacy skills

    Cathy D Meade, W Paul Mckinney et al.•American Journal of Public Health•1994

  • Information presentation and decisions to enter clinical trials

    Open Access•Jillian A Wragg, E Robinson et al.•Social Science & Medicine•2000

Citations per year0.11
Citation span2008 - 2015 (8)
Highly citedNo

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