Perceptions of pediatric clinical research among African American and Caucasian parents

Journal of the National Medical Association

Volumn 101, Issue 9, 2009, Pages 900-907

  Shaw, Maren G ^a   Morrell, Dean S ^a   Corbie Smith, Giselle M ^a   Goldsmith, Lowell A ^a  

^a UNIVERSITY OF NORTH CAROLINA SCHOOL OF MEDICINE   (United States)

Author keywords

Knowledge, attitudes, and beliefs; Race ethnicity

Indexed keywords

AFRICAN AMERICAN; ARTICLE; ATTITUDE; CAUCASIAN; CLINICAL DECISION MAKING; CLINICAL RESEARCH; DAILY LIFE ACTIVITY; ETHNICITY; HEALTH CARE PERSONNEL; HEALTH DISPARITY; HEALTH SURVEY; HUMAN; INDEPENDENT VARIABLE; KNOWLEDGE; MEDICAL RESEARCH; PARENT; PATIENT PARTICIPATION; PERCEPTION; PRIORITY JOURNAL; QUESTIONNAIRE; RACE DIFFERENCE;

EID: 70350069849     PISSN: 00279684     EISSN: None     Source Type: Journal    
DOI: 10.1016/S0027-9684(15)31037-3     Document Type: Article

References (47)

1. Shavers-Hornaday VL, Lynch CF, Burmeister LF, et al. Why are African Americans under-represented in medical research studies? Impediments to participation. Ethn Health. 1997;2:31-45.
2. Field MJ, Behrman RE, eds. Institute of Medicine Committee on Clinical Research Involving Children. Ethical Conduct of Clinical Research Involving Children. Washington, DC: National Academy Press; 2004:45.
3. Field MJ, Behrman RE, eds. Institute of Medicine Committee on Clinical Research Involving Children. Ethical Conduct of Clinical Research Involving Children. Washington, DC: National Academy Press; 2004:127.
4. http://www.harrisinteractive.com/news/allnewsbydate.asp?NewsID=868. Accessed July 12, 2005.
5. Sateren WB, Trimble EL, Abrams J, et al. How sociodemographics, presence of oncology specialists, and hospital cancer programs affect accrual to cancer treatment trials. J Clin Oncol. 2002;20(8):2109-2117. (Pubitemid 34408802)
6. Washington, Harriet A. Medical Apartheid The dark history of medical experimentation on the black Americans from colonial times to the present. New York, NY: Doubleday; 2006.
7. Evelyn B, Toigo T, Banks D, et al. Participation of racial/ethnic groups in clinical trials and race-related labeling: a review of new molecular entities approved 1995-1999. J Natl Med Assoc. 2001;93(12 suppl):18S-24S.
8. Gifford AL, Cunningham WE, Heslin KC, et al. Participation in research and access to experimental treatments by HIV-infected patients. N Engl J Med. 2002;346:1373-1382.
9. Haynes MA, Smedley BD, eds, for the Institute of Medicine. The Unequal Burden of Cancer: An Assessment of NIH Research and Programs for Ethnic Minorities and Medically Underserved. Washington, DC: National Academy Press; 1999.
10. Giuliano AR, Mokuau N, Hughes C, et al. Participation of minorities in cancer research: the influence of structural, cultural, and linguistic factors. Ann Epidemiol. 2000;10(8 suppl):S22-S34.
11. Heiat A, Gross CP, Krumholz HM. Representation of the elderly, women, and minorities in heart failure clinical trials. Arch Intern Med. 2002;162:1682-1688. (Pubitemid 34894796)
12. Svensson CK. Representation of American blacks in clinical trials of new drugs. JAMA. 1989;12:263-265.
13. Hall WD. Representation of blacks, women and the very elderly (aged > or = 80) in 28 major randomized clinical trials. Ethn Dis. 1999:333-340.
14. Killien M, Bigby JA, Champion V et al. Involving minority and under-represented women in clinical trials: The National Centers of Excellence in Women's Health. J Womens Health Gend Based Med. 2000;9:1061-1070. (Pubitemid 32060900)
15. Murthy VH, Krumhoz HM, Gross CP. Participation in cancer clinical trials: Race-, sex-, and age-based disparities. JAMA. 2004;291:2720-2726. (Pubitemid 38725421)
16. Reynolds T. Screening and prevention trials step up minority recruitment. J Natl Cancer Inst. 1996;88(18):1265-1267.
17. McCarthy CR. Historical background of clinical trials involving women and minorities. Acad Med. 1994;69:695-698.
18. Pinsky PF, Ford M, Gamito E et al. Enrollment of racial and ethnic minorities in the prostate, lung, colorectal and ovarian cancer screening trial. J Natl Med Assoc. 2008;100(3):291-298.
19. Walsh C, Ross FL. Are minority children under- or overrepresented in pediatric research? Pediatrics. 2003;112(4):890-895.
20. Kelly ML, Ackerman PD, Ross LF. The participation of minorities in published pediatric research. J Natl Med Assoc. 2005;97(6):777-783.
21. Bleyer WA, Tejeda HA, Murphy SB, et al. Equal participation of minority patients in U.S. national pediatric cancer clinical trials. J Pediatr Hematol Oncol. 1997;19(5):423-427.
22. Tait A et al. Participation of Children in Clinical Research, Factors that Influence a Parent's Decision to Consent. Anesthesiology. 2003;99(4):819-825.
23. NIH guidelines on the inclusion of women and minorities as subjects in clinical research. Federal Register. 1994;59:14508-14513.
24. National Institutes of Health: Policy on the Inclusion of Children as Subjects in Clinical research 1998. http://grants.nih.gov/grants/guide/notice- files/not98-024.html. Accessed September 28, 2008.
25. Bethesda, Office of Extramural Research; 1997.
26. Pediatric Research Equity Act of 2003. http://www.fda.gov/cder/pediatric/ S-650-PREA.pdf. Accessed September 28, 2008.
27. Best Pharmaceuticals of Children Act. http://www.fda.gov/cder/pediatric/ PL107-109.pdf. Accessed 9/28/08.
28. Food and Drug Administration (FDA) Modernization Act of 1997. Pub. L. 105-115.
29. Johnson RE, Williams RD, Nagy MC, et al. Retention of under-served women in clinical trials: a focus group study. Ethn Dis. 2003;13(2):268-278. (Pubitemid 36701630)
30. Corbie-Smith G, Thomas SB, Williams MV, et al. Attitudes and beliefs of African Americans toward participation in medical research. J Gen Intern Med. 1999;14(9):537-546. (Pubitemid 29441632)
31. Caldwell PH, Butow PN, Craig JC. Parents' attitudes to children's participation in randomized controlled trials. J Pediatr. 2003;142(5):554-559.
32. Madsen S, Holm S, Riis P. Ethical aspects of clinical trials: the attitudes of the public and out-patients. J Intern Med. 1999;245(6):571-579. (Pubitemid 29278865)
33. Madsen SM, Mirza MR, Holm S, et al. Attitudes towards clinical research amongst participants and nonparticipants. J Intern Med. 2002;251(2):156-168. (Pubitemid 34146699)
34. Field MJ, Behrman RE. Responsible research involving children. Ambul Pediatr. 2005;5(1):47-49.
35. Wikipedia. Likert scale. http://en.wikipedia.org/wiki/Likert-scale. Accessed January 31, 2009.
36. North Carolina 2000 census data. http://factfinder.census.gov/servlet/ QTTable?-bm=y&-geo-id=04000US37&-qr-name=DEC-2000-SF1-U-DP1&-ds- name=DEC-2000-SF1-U. Accessed September 28, 2008.
37. Moseley KL, Freed GL, Bullard CM, et al. Measuring African-American parents' cultural mistrust while in a healthcare setting: a pilot study. J Natl Med Assoc. 2007;99(1):15-21.
38. Lee JS, Tamayo-Sarver J, Kinneer P, et al. Association between patient race/ethnicity and perceived interpersonal aspects of care in the emergency department. J Natl Med Assoc. 2008;100(1):79-85. (Pubitemid 351224261)
39. Boulware LE, Cooper LA, Ratner LE, et al. Race and trust in the health care system. Public Health Rep. 2003;118(4):358-365. (Pubitemid 36828340)
40. Doescher MP, Saver BG, Franks P, et al. Racial and ethnic disparities in perceptions of physician style and trust. Arch Fam Med. 2000;9(10):1156-1163. (Pubitemid 32014714)
41. Benkert R, Peters RM, Clark R, et al. Effects of perceived racism, cultural mistrust and trust in providers on satisfaction with care. J Natl Med Assoc. 2006;98(9):1532-1540. (Pubitemid 44413923)
42. Moreno-John G, Gachie A, Fleming CM, et al. Ethnic minority older adults participating in clinical research: developing trust. J Aging Health. 2004;16(5 suppl):93S-123S. (Pubitemid 39362333)
43. Bates BR, Harris TM. The Tuskegee Study of Untreated Syphilis and Public Perceptions of Biomedical Research: A Focus Group Study. J Natl Med Assoc. 2004;96(8):1051-1064.
44. Katz, RV, Hegeles SS, Green BL, et al. The Tuskegee Legacy Project: history, preliminary scientific findings, and unanticipated societal benefits. Dent Clin North Am. 2003;47:1-19.
45. Katz RV, Green L, Kressin N et al. Willingness of Minorities to Participate in Biomedical Studies: Confirmatory Findings from a Follow-Up Study Using the Tuskegee Legacy Project Questionnaire. J Natl Med Assoc. 2007;99(9):1052-1060. (Pubitemid 47463291)
46. Wendler D, Kington R, Madans J, et al. Are Racial and Ethnic Minorities Less Willing to Participate in Heath Research? PLoS Medicine. 2006;3(2):201-210.
47. Response letter from Drs Matthew K. Wynia and Vanessa Northington Gamble to reference #40. http://medicine.plosjournals.org/perlserv/?request=read- response&doi=10.1371/journal.pmed.0030019#r1085. Accessed September 28, 2008.