Skip to main content
Journal of the National Medical Association logoLink to Journal of the National Medical Association
. 2005 Jun;97(6):777–783.

The participation of minorities in published pediatric research.

Michael L Kelly 1, Paul D Ackerman 1, Lainie Friedman Ross 1
PMCID: PMC2569501  PMID: 16035575

Abstract

OBJECTIVES: There is extensive documentation that minority adults are underrepresented in medical research, but there are scant data regarding minority children and their parents. DESIGN: All full-length articles published in three general pediatric journals between July 2002 through June 2003 were collected and reviewed. Articles were excluded if they did not include at least one U.S. researcher, all subjects enrolled at U.S. institutions, parents or children as subjects, some prospective data collection, or between eight and 10,000 subjects. Corresponding authors were surveyed to clarify race/ethnicity data, language barriers and how race/ethnicity data were collected. RESULTS: Two-hundred-twenty-eight articles qualified for further analysis. Black children and parents and Asian/Pacific Islander parents were overrepresented, and Hispanic children and parents were underrepresented compared to the Census data. Most researchers collected race/ethnicity data by having subjects self-report. Most studies did not have translation available, although most Hispanic and Asian/Pacific Islander subjects were enrolled in studies in which translation was available. CONCLUSION: Our data show that Hispanic and Asian/Pacific Islander research subjects are more likely to participate in pediatric research when translation is available. If the goal is to ensure access to pediatric research for all ethnic populations, then more research needs to accommodate non-English-speaking participants.

Full text

PDF
777

Selected References

These references are in PubMed. This may not be the complete list of references from this article.

  1. Ackerman Paul D., Kelly Michael L., Walsh Catherine A., Ross Lainie Friedman. Do peer guidelines or editorial policies affect the reporting and discussion of race and ethnicity in pediatric research? Account Res. 2005 Jan-Mar;12(1):17–31. doi: 10.1080/08989620590918907. [DOI] [PubMed] [Google Scholar]
  2. Begg C., Cho M., Eastwood S., Horton R., Moher D., Olkin I., Pitkin R., Rennie D., Schulz K. F., Simel D. Improving the quality of reporting of randomized controlled trials. The CONSORT statement. JAMA. 1996 Aug 28;276(8):637–639. doi: 10.1001/jama.276.8.637. [DOI] [PubMed] [Google Scholar]
  3. Bleyer W. A., Tejeda H. A., Murphy S. B., Brawley O. W., Smith M. A., Ungerleider R. S. Equal participation of minority patients in U.S. national pediatric cancer clinical trials. J Pediatr Hematol Oncol. 1997 Sep-Oct;19(5):423–427. doi: 10.1097/00043426-199709000-00003. [DOI] [PubMed] [Google Scholar]
  4. Centers for Disease Control and Prevention (CDC) Reporting race and ethnicity data--National Electronic Telecommunications System for Surveillance, 1994-1997. MMWR Morb Mortal Wkly Rep. 1999 Apr 23;48(15):305–312. [PubMed] [Google Scholar]
  5. Flores G., Bauchner H., Feinstein A. R., Nguyen U. S. The impact of ethnicity, family income, and parental education on children's health and use of health services. Am J Public Health. 1999 Jul;89(7):1066–1071. doi: 10.2105/ajph.89.7.1066. [DOI] [PMC free article] [PubMed] [Google Scholar]
  6. Flores Glenn, Fuentes-Afflick Elena, Barbot Oxiris, Carter-Pokras Olivia, Claudio Luz, Lara Marielena, McLaurin Jennie A., Pachter Lee, Ramos-Gomez Francisco J., Mendoza Fernando. The health of Latino children: urgent priorities, unanswered questions, and a research agenda. JAMA. 2002 Jul 3;288(1):82–90. doi: 10.1001/jama.288.1.82. [DOI] [PubMed] [Google Scholar]
  7. Gifford Allen L., Cunningham William E., Heslin Kevin C., Andersen Ron M., Nakazono Terry, Lieu Dale K., Shapiro Martin F., Bozzette Samuel A., HIV Cost and Services Utilization Study Consortium Participation in research and access to experimental treatments by HIV-infected patients. N Engl J Med. 2002 May 2;346(18):1373–1382. doi: 10.1056/NEJMsa011565. [DOI] [PubMed] [Google Scholar]
  8. Lange Jean W. Methodological concerns for non-Hispanic investigators conducting research with Hispanic Americans. Res Nurs Health. 2002 Oct;25(5):411–419. doi: 10.1002/nur.10049. [DOI] [PubMed] [Google Scholar]
  9. Liu Lihua, Krailo Mark, Reaman Gregory H., Bernstein Leslie, Surveillance, Epidemiology and End Results Childhood Cancer Linkage Group Childhood cancer patients' access to cooperative group cancer programs: a population-based study. Cancer. 2003 Mar 1;97(5):1339–1345. doi: 10.1002/cncr.11192. [DOI] [PubMed] [Google Scholar]
  10. Louie K. B. White paper on the health status of Asian Americans and Pacific Islanders and recommendations for research. Nurs Outlook. 2001 Jul-Aug;49(4):173–178. doi: 10.1067/mno.2001.113404. [DOI] [PubMed] [Google Scholar]
  11. Moher D., Schulz K. F., Altman D. G. The CONSORT statement: revised recommendations for improving the quality of reports of parallel-group randomised trials. Lancet. 2001 Apr 14;357(9263):1191–1194. [PubMed] [Google Scholar]
  12. Moy E., Valente E., Jr, Levin R. J., Griner P. F. Academic medical centers and the care of underserved populations. Acad Med. 1996 Dec;71(12):1370–1377. doi: 10.1097/00001888-199612000-00024. [DOI] [PubMed] [Google Scholar]
  13. Oppenheimer G. M. Paradigm lost: race, ethnicity, and the search for a new population taxonomy. Am J Public Health. 2001 Jul;91(7):1049–1055. doi: 10.2105/ajph.91.7.1049. [DOI] [PMC free article] [PubMed] [Google Scholar]
  14. Stewart Anita L., Nápoles-Springer Anna M. Advancing health disparities research: can we afford to ignore measurement issues? Med Care. 2003 Nov;41(11):1207–1220. doi: 10.1097/01.MLR.0000093420.27745.48. [DOI] [PubMed] [Google Scholar]
  15. U.S. Food and Drug Administration Guideline for the study and evaluation of gender differences in the clinical evaluation of drugs; notice. Fed Regist. 1993 Jul 22;58(139):39406–39416. [PubMed] [Google Scholar]
  16. Walsh Catherine, Ross Lainie F. Are minority children under- or overrepresented in pediatric research? Pediatrics. 2003 Oct;112(4):890–895. doi: 10.1542/peds.112.4.890. [DOI] [PubMed] [Google Scholar]
  17. Walsh Catherine, Ross Lainie F. Whether and why pediatric researchers report race and ethnicity. Arch Pediatr Adolesc Med. 2003 Jul;157(7):671–675. doi: 10.1001/archpedi.157.7.671. [DOI] [PubMed] [Google Scholar]
  18. Weinick Robin M., Jacobs Elizabeth A., Stone Lisa Cacari, Ortega Alexander N., Burstin Helen. Hispanic healthcare disparities: challenging the myth of a monolithic Hispanic population. Med Care. 2004 Apr;42(4):313–320. doi: 10.1097/01.mlr.0000118705.27241.7c. [DOI] [PubMed] [Google Scholar]
  19. Weitzman M., Byrd R. S., Auinger P. Black and white middle class children who have private health insurance in the United States. Pediatrics. 1999 Jul;104(1 Pt 2):151–157. [PubMed] [Google Scholar]

Articles from Journal of the National Medical Association are provided here courtesy of National Medical Association

RESOURCES