Literature DB >> 23324203

Improving informed consent with minority participants: results from researcher and community surveys.

Sandra Crouse Quinn1, Mary A Garza, James Butler, Craig S Fryer, Erica T Casper, Stephen B Thomas, David Barnard, Kevin H Kim.   

Abstract

Strengthening the informed consent process is one avenue for improving recruitment of minorities into research. This study examines that process from two different perspectives, that of researchers and that of African American and Latino community members. Through the use of two separate surveys, we compared strategies used by researchers with the preferences and attitudes of community members during the informed consent process. Our data suggest that researchers can improve the informed consent process by incorporating methods preferred by the community members along with methods shown in the literature for increasing comprehension. With this approach, the informed consent process may increase both participants' comprehension of the material and overall satisfaction, fostering greater trust in research and openness to future research opportunities.

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Mesh:

Year:  2012        PMID: 23324203      PMCID: PMC3685140          DOI: 10.1525/jer.2012.7.5.44

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


  24 in total

1.  Readability standards for informed-consent forms as compared with actual readability.

Authors:  Michael K Paasche-Orlow; Holly A Taylor; Frederick L Brancati
Journal:  N Engl J Med       Date:  2003-02-20       Impact factor: 91.245

2.  Distrust, race, and research.

Authors:  Giselle Corbie-Smith; Stephen B Thomas; Diane Marie M St George
Journal:  Arch Intern Med       Date:  2002-11-25

3.  Utilization of health care services and willingness to participate in future medical research: the role of race and social support.

Authors:  Besangie Sellars; Mary A Garza; Craig S Fryer; Stephen B Thomas
Journal:  J Natl Med Assoc       Date:  2010-09       Impact factor: 1.798

Review 4.  Interventions to improve research participants' understanding in informed consent for research: a systematic review.

Authors:  James Flory; Ezekiel Emanuel
Journal:  JAMA       Date:  2004-10-06       Impact factor: 56.272

5.  Diverse perceptions of the informed consent process: implications for the recruitment and participation of diverse communities in the National Children's Study.

Authors:  Kimberley D Lakes; Elaine Vaughan; Marissa Jones; Wylie Burke; Dean Baker; James M Swanson
Journal:  Am J Community Psychol       Date:  2012-03

6.  Quality of informed consent in cancer clinical trials: a cross-sectional survey.

Authors:  S Joffe; E F Cook; P D Cleary; J W Clark; J C Weeks
Journal:  Lancet       Date:  2001-11-24       Impact factor: 79.321

7.  African Americans' views on research and the Tuskegee Syphilis Study.

Authors:  V S Freimuth; S C Quinn; S B Thomas; G Cole; E Zook; T Duncan
Journal:  Soc Sci Med       Date:  2001-03       Impact factor: 4.634

Review 8.  Toward a fourth generation of disparities research to achieve health equity.

Authors:  Stephen B Thomas; Sandra Crouse Quinn; James Butler; Craig S Fryer; Mary A Garza
Journal:  Annu Rev Public Health       Date:  2011       Impact factor: 21.981

9.  Randomized, controlled trial of an easy-to-read informed consent statement for clinical trial participation: a study of the Eastern Cooperative Oncology Group.

Authors:  Cathy A Coyne; Ronghui Xu; Peter Raich; Kathy Plomer; Mark Dignan; Lari B Wenzel; Diane Fairclough; Thomas Habermann; Linda Schnell; Susan Quella; David Cella
Journal:  J Clin Oncol       Date:  2003-03-01       Impact factor: 44.544

10.  Informed consent in a clinical trial of a novel treatment for rheumatoid arthritis.

Authors:  Lisa G Criscione; Jeremy Sugarman; Linda Sanders; David S Pisetsky; E William St Clair
Journal:  Arthritis Rheum       Date:  2003-06-15
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  10 in total

1.  Does an interactive trust-enhanced electronic consent improve patient experiences when asked to share their health records for research? A randomized trial.

Authors:  Christopher A Harle; Elizabeth H Golembiewski; Kiarash P Rahmanian; Babette Brumback; Janice L Krieger; Kenneth W Goodman; Arch G Mainous; Ray E Moseley
Journal:  J Am Med Inform Assoc       Date:  2019-07-01       Impact factor: 4.497

2.  Racial/Ethnic Differences in Comprehension of Biospecimen Collection: a Nationwide University of Rochester Cancer Center NCI Community Oncology Research Program Study.

Authors:  Matthew Asare; Charles E Heckler; Eva Culakova; Charles S Kamen; Amber S Kleckner; Lori M Minasian; David S Wendler; Michelle Feige; Carol J Weil; Joan Long; Sharon K Cole; Adedayo A Onitilo; Luke J Peppone; Gary R Morrow; Michelle C Janelsins
Journal:  J Cancer Educ       Date:  2020-04       Impact factor: 2.037

3.  Ethical considerations for involving Latina adolescents in mental health research.

Authors:  Allison L McCord
Journal:  J Child Adolesc Psychiatr Nurs       Date:  2017-05-02

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

Authors:  Christian M Simon; Kai Wang; Laura A Shinkunas; Daniel T Stein; Paul Meissner; Maureen Smith; Rebecca Pentz; David W Klein
Journal:  J Empir Res Hum Res Ethics       Date:  2021-08-19       Impact factor: 1.742

5.  Self-Consent for HIV Prevention Research Involving Sexual and Gender Minority Youth: Reducing Barriers Through Evidence-Based Ethics.

Authors:  Celia B Fisher; Miriam R Arbeit; Melissa S Dumont; Kathryn Macapagal; Brian Mustanski
Journal:  J Empir Res Hum Res Ethics       Date:  2016-03-07       Impact factor: 1.742

6.  The Influence of Race and Ethnicity on Becoming a Human Subject: Factors Associated with Participation in Research.

Authors:  Mary A Garza; Sandra Crouse Quinn; Yan Li; Luciana Assini-Meytin; Erica T Casper; Craig S Fryer; James Butler; Natasha A Brown; Kevin H Kim; Stephen B Thomas
Journal:  Contemp Clin Trials Commun       Date:  2017-05-24

7.  If you come from a well-known organisation, I will trust you: Exploring and understanding the community's attitudes towards healthcare research in Cambodia.

Authors:  Sreymom Pol; Shivani Fox-Lewis; Leakhena Neou; Michael Parker; Patricia Kingori; Claudia Turner
Journal:  PLoS One       Date:  2018-04-18       Impact factor: 3.240

8.  A novel simulation-based approach to training for recruitment of older adults to clinical trials.

Authors:  Harriet Fisher; Sondra Zabar; Joshua Chodosh; Aisha Langford; Chau Trinh-Shevrin; Scott Sherman; Lisa Altshuler
Journal:  BMC Med Res Methodol       Date:  2022-06-28       Impact factor: 4.612

9.  Recruiting for epigenetic research: facilitating the informed consent process.

Authors:  Nancy Jallo; Debra E Lyon; Patricia Anne Kinser; Debra Lynch Kelly; Victoria Menzies; Colleen Jackson-Cook
Journal:  Nurs Res Pract       Date:  2013-06-06

10.  'We're not gonna have a big quit if loose ones are around': urban, African American smokers' beliefs concerning single cigarette use reduction.

Authors:  Lilianna Phan; Charlene Chao-Li Kuo; Craig S Fryer; Mia A Smith-Bynum; Pamela I Clark; James Butler
Journal:  Health Educ Res       Date:  2022-01-22
  10 in total

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