Preconsent education about research processes improved African Americans' willingness to participate in clinical research

Journal of Clinical Epidemiology

Volumn 64, Issue 8, 2011, Pages 872-877

  Dunlop, Anne L ^a   Leroy, Zanie C ^b   Logue, Kristi M ^a   Glanz, Karen ^c   Dunlop, Boadie W ^a  

^a EMORY UNIVERSITY SCHOOL OF MEDICINE   (United States)

^b ATLANTA VA MEDICAL CENTER   (United States)

^c UNIVERSITY OF PENNSYLVANIA   (United States)

Author keywords

Clinical trial; Education; HIPAA; Informed consent; Minority groups; Patient participation

Indexed keywords

ADULT; AFRICAN AMERICAN; ARTICLE; CLINICAL RESEARCH; FEMALE; HUMAN; INFORMED CONSENT; MAJOR CLINICAL STUDY; MALE; OUTPATIENT; PATIENT EDUCATION; PATIENT PARTICIPATION; PRECONSENT EDUCATION; PRIORITY JOURNAL; RESEARCH SUBJECT;

ADULT; AFRICAN AMERICANS; ATTITUDE TO HEALTH; BIOMEDICAL RESEARCH; CLINICAL TRIALS, PHASE I AS TOPIC; CLINICAL TRIALS, PHASE II AS TOPIC; FEMALE; HUMANS; INFORMED CONSENT; MALE; MIDDLE AGED; PATIENT PARTICIPATION; QUESTIONNAIRES;

EID: 79959715337     PISSN: 08954356     EISSN: 18785921     Source Type: Journal    
DOI: 10.1016/j.jclinepi.2010.11.008     Document Type: Article

References (27)

1. A.R. Giuliano, N. Mokuau, C. Hughes, G. Tortolero-Luna, B. Risendal, and R.C.S. Ho Participation of minorities in cancer research: the influence of structural, cultural, and linguistic factors Ann Epidemiol 10 2000 S22 S34
2. V.H. Murthy, H.M. Krumholz, and C.P. Gross Participation in cancer clinical trials: race-, sex-, and age-based disparities JAMA 291 2004 2720 2726 (Pubitemid 38725421)
3. R. Jackson, L.E. Chambless, L.E. Yang, T. Byrne, R. Watson, and A. Folsom Differences between respondents and nonrespondents in a multicenter community-based study vary by gender ethnicity J Clin Epidemiol 49 1996 1441 1446 (Pubitemid 27028934)
4. U.S. Department of Health and Human Services, National Institutes of Health Guidelines on the inclusion of women and minorities as subjects in clinical research (59 FR 14508-14513). Bethesda, MD Department of Health and Human Services, National Institutes of Health 1994 Available at http://www.hhs.gov/ohrp/humansubjects/guidance/59fr14508.htm Accessed February 10, 2010
5. V.L. Shavers, C.F. Lynch, and L.F. Burmeister Racial differences in factors that influence the willingness to participate in medical research studies Ann Epidemiol 12 2002 248 256 (Pubitemid 34414937)
6. J.B. Braunstein, N.S. Sherber, S.P. Schulman, E.L. Ding, and N.R. Powe Race, medical researcher distrust, perceived harm, and willingness to participate in cardiovascular prevention trials Medicine (Baltimore) 87 2008 1 9
7. G. Corbie-Smith, S. Thomas, and D. St George Distrust, race, and research Arch Intern Med 162 2002 2458 2463 (Pubitemid 35340462)
8. S. Ross, A. Grant, C. Counsell, W. Gillespie, I. Russell, and R. Prescott Barriers to participation in randomized controlled trials: a systematic review J Clin Epidemiol 52 1999 1143 1156 (Pubitemid 29535414)
9. D.F. Farmer, S.A. Jackson, F. Camacho, and M.A. Hall Attitudes of African American and low socioeconomic status white women toward medical research J Health Care Poor Underserved 18 2007 85 99
10. V. Freimuth, S. Quinn, S. Thomas, G. Cole, E. Zook, and T. Duncan African Americans' views on research and the Tuskegee Syphilis study Soc Sci Med 52 2001 797 808
11. G. Corbie-Smith, S.B. Thomas, M.V. Williams, and S. Moody-Ayers Attitudes and beliefs of African Americans toward participation in medical research J Gen Intern Med 14 1999 537 546 (Pubitemid 29441632)
12. P. Herring, S. Montgomery, A. Yancey, D. Williams, and G. Fraser Understanding the challenges in recruiting blacks to a longitudinal cohort study: the Adventist health study Ethn Dis 14 2004 423 430 (Pubitemid 39140085)
13. M.B. Miles, and M.A. Huberman Qualitative data analysis: an expanded sourcebook 1995 Sage Publications Thousand Oaks, CA
14. D. Shalowitz, and D. Wendler Informed consent for research and authorization under the Health Insurance Portability and Accountability Act Privacy Rule: an integrated approach Ann Intern Med 144 2006 685 688 (Pubitemid 46780652)
15. P. Breese, W. Burman, C. Rietmeijer, and D. Lezotte The Health Insurance Portability and Accountability Act and the informed consent process Ann Intern Med 141 2004 897 899
16. M. Lombard, J. Snyder-Duch, and C.C. Bracken Content analysis in mass communication: assessment and reporting of intercoder reliability Hum Commun Res 28 2002 587 604 (Pubitemid 37496222)
17. L.J. Damschroder, T.R. Roberts, C.C. Goldstein, M.E. Miklosovic, and P.A. Ubel Trading people versus trading time: what is the difference? Popul Health Metr 3 2005 10
18. D. Wendler, R. Kington, J. Madans, G. Van Wye, H. Christ-Schmidt, and L.A. Pratt Are racial and ethnic minorities less willing to participate in health research? PLoS Med 3 2006 e19
19. M. Krousel-Wood, P. Muntner, A. Jannu, A. Hyre, and J. Breault Does waiver of written informed consent from the institutional review board affect response rate in a low-risk research study? J Investig Med 54 2006 174 179 (Pubitemid 44330792)
20. A.L. Dunlop, T. Graham, Z. Leroy, K. Glanz, and B.W. Dunlop The impact of HIPAA authorization on African Americans' willingness to participate in research Ann Epidemiol 17 2007 899 905 (Pubitemid 47588949)
21. G. Corbie-Smith, I. Williams, C. Blumenthal, J. Dorrance, S.E. Estroff, and G. Henderson Relationships and communication in minority participation in research: multidimensional and multidirectional J Natl Med Assoc 99 2007 489 498 (Pubitemid 46752727)
22. J. Banks-Wallace, J. Enyart, and C. Johnson Recruitment and entrance of participants into a physical activity intervention for hypertensive African American women ANS Adv Nurs Sci 27 2004 102 116 (Pubitemid 39456614)
23. J. Flory, and E. Emanuel Interventions to improve research participants' understanding in informed consent for research: a systematic review JAMA 292 2004 1593 1601 (Pubitemid 39314966)
24. D.V. Jeste, B.W. Palmer, S. Golshan, L.T. Eyler, L.B. Dunn, and T. Meeks Multimedia consent for research in people with schizophrenia and normal subjects: a randomized controlled trial Schizophr Bull 35 2009 719 729
25. J. Henry, B.W. Palmer, L. Palinkas, D.K. Glorioso, M.P. Cligiuri, and D.V. Jeste Reformed consent: adapting to new media and research participant preferences IRB 31 2 2009 1 8
26. D. Warden, M.H. Trivedi, S.R. Wisniewski, L. Davis, A.A. Nierenberg, and B.N. Gaynes Predictors of attrition during initial (citalopram) treatment for depression: a STAR (*)D report Am J Psychiatry 164 2007 1189 1197 (Pubitemid 47292407)
27. J. Dunbar-Jacob, J.L. Holmes, S. Sereika, C.K. Kwoh, L.E. Burke, and T.W. Starz Factors associated with attrition of African Americans during the recruitment phase of a clinical trial examining adherence among individuals with rheumatoid arthritis Arthritis Rheum 51 2004 422 428 (Pubitemid 38725142)