Are Minority Children Under- or Overrepresented in Pediatric Research?
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* Pritzker School of Medicine, University of Chicago, Chicago, Illinois
Department of Pediatrics, University of Chicago, Chicago, Illinois
MacLean Center for Clinical Medical Ethics, University of Chicago, Chicago, Illinois
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ABSTRACT |
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 TOP ABSTRACT METHODSRESULTSDISCUSSIONCONCLUSIONSREFERENCES |
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Objectives. There is extensive documentation that minority adults are underrepresented in medical research, but there are scant data regarding minority children and their parents.
Methods. All full-length articles published in the paper edition of 3 general pediatric journals between July 1999 and June 2000 were collected and reviewed. Articles were excluded when they did not include at least 1 US researcher, all subjects at US institutions, parents or children as subjects, some prospective data collection, or between 8 and 10 000 subjects. We recorded the number and race/ethnicity (R/E) of all subjects, the type of research, and the type of data collected. Corresponding authors were surveyed to clarify R/E data.
Results. A total of 192 studies qualified. R/E data were reported in 114 (59%) studies, and survey data provided additional or new information in 25 studies resulting in R/E data in 128 (67%) articles accounting for 75% of the subjects. R/E was described by >10 different labels. There was an overrepresentation of black subjects and an underrepresentation of white and Hispanic subjects compared with the census data. When compared with research participation of child subjects, generally, black children were overrepresented and Hispanic children were underrepresented in clinical trials, and both were underrepresented in therapeutic research. Black and Hispanic children were overrepresented in potentially stigmatizing research.
Conclusions. Overall, we found an overrepresentation of black subjects and an underrepresentation of white and Hispanic subjects with significant variations depending on the type of research.
Key Words: race • ethnicity • research subjects • research
Abbreviations: NIH, National Institutes of Health • R/E, race/ethnicity • PSR, potentially stigmatizing research
When the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research addressed fairness in subject selection in the Belmont Report of 1979, the main concern was to ensure fairness in the distribution of risks.1 By 1994, the pendulum had swung, and the concern now focused on the fairness in the distribution of benefits. To ensure access for women and minorities, the National Institutes of Health (NIH) began to require that all human subject research include women and minorities and that phase III clinical trials include adequate numbers to permit subset analyses.2 In part, the shift occurred because clinical trials sometimes offer the best chance of therapeutic success such that excluded populations may be disadvantaged.3,4 There was also concern that unless research included women and minorities, there was no evidence that the treatments would be efficacious for these groups.2, 3,5 In 1998, the NIH began to require that NIH-funded research include children earlier in the process.6 Again, this was a major shift in policy from the original National Commission report on children (1977), which recommended that research be done first on animals, then on adults, and only afterward, on children.7
There are data to show that despite the initiatives to include minorities, they remain underrepresented in research, including clinical trials.3, 4,8 However, little is known about whether racial and ethnic discrepancies exist in pediatric research. In this project, we sought to examine the representation of black and Hispanic children and their parents in pediatric medical research.
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METHODS |
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TOPABSTRACTMETHODSRESULTSDISCUSSIONCONCLUSIONSREFERENCES |
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All full-length articles published in the paper edition of 3 general pediatric journals, Pediatrics, Journal of Pediatrics, and Archives of Pediatrics and Adolescent Medicine, from July 1999 through June 2000 were collected and reviewed. Articles were excluded for 3 reasons. First, they were excluded when they did not include at least 1 US researcher and all subjects from US institutions because race/ethnicity (R/E) classifications differ in other countries. Second, articles were excluded when they did not include some prospective data collection. Our reason for excluding studies with exclusively retrospective studies (eg, studies using medical records, public databases, or banked tissue samples) was that most have been done with a waiver of informed consent. Our goal was to understand the inclusion of minority children and parents in research in which they or their parents had to consent to participate. This will become all the more relevant given that future research will need to conform to Health Insurance Portability and Accountability Act consent requirements.9 Third, articles were excluded when they were case studies with <8 or >10 000 subjects, studied a population other than children and/or their parents (eg, health care providers), or were based on national surveys. Our reason for excluding articles with <8 subjects was that case studies are neither a systematic investigation nor generalizable and do not qualify as research under the federal regulations.10 Studies with >10 000 subjects were excluded because many were based on national data sets such as National Health and Nutrition Examination Survey in which minority families are oversampled to ensure adequate sizes for subset analyses. We excluded these studies because 1) the data are collected for use by researchers in many different fields and are not funded by or focused on pediatric health care and thus are not representative of pediatric research, 2) the same subjects would be counted numerous times, and 3) the practice of oversampling minorities in these large studies would skew the data to show high minority participation.
We recorded whether the articles provided R/E data of child and parent subjects and what the R/E breakdown was. All subjects who were labeled as black, African American, or African other are labeled as black. All subjects who were labeled as white or white, non-Hispanic are labeled as white. All subjects who were labeled as Hispanic, Latino, Puerto Rican, white Hispanic, or black Hispanic are labeled as Hispanic. All subjects who were labeled as Asian American, Pacific Islander, Chinese, Southeast Asian, or Indian are labeled as Asians. All subjects who were labeled as nonwhite, nonblack, mixed, multicultural, or other are labeled as other.
There are 2 different standards for R/E data collection as described in the Office of Management and Budget directive 15.11,12 The 1-question format combines race and ethnicity and has a minimum of 6 categories: American Indian or Alaska Native, Asian, black or African American, Hispanic or Latino, Native Hawaiian or Other Pacific Islander, and white. The 2-question format collects data on race separately from Hispanic/Latino ethnicity. We report our data using the 1-question format; the US census data uses the 2-question format, making direct comparisons inexact.13
R/E data may be recorded at the stages of recruitment, enrollment, and/or completion but is most often provided in the articles only for the subjects analyzed. When possible, we recorded R/E of subjects analyzed. Researchers who did not report R/E data of subjects at any stage were contacted to determine whether they had collected the data and whether they could provide it to us. When the researchers gave us approximate percentages (eg, the R/E data were similar to previously reported samples), we did not include the R/E data. We did not survey the researchers on how they collected the data (eg, self-identification, interviewer assessment). When both parents and children were subjects and R/E was given for only one or the other, we assumed that the race of parent and the child were the same, unless stated otherwise in the article or in communication with the author.
A child or a parent was considered a subject when the research required their involvement or the use of their personal data. However, when a parent was questioned only about particular features of the child’s early history, this was considered linked data to the child, and the parent was not considered a subject. Likewise, when a child’s medical records were accessed to determine whether a parent had followed medical advice (eg, did the parent follow telephone triage advice and go to the emergency department), the data were considered linked, and the child was not considered a subject.
Subjects were classified as children when they were below age 18. Subjects were classified as adults when they were above aged 18 or were participating as parents in the research.
We evaluated which type of data the researchers collected: whether it involved record review, noninvasive measurements, or more invasive methods (ranging from venous phlebotomy to invasive tests such as tissue biopsy, lumbar puncture, intubation, central line placement, or the participation in clinical trials).
We documented whether the articles were therapeutic, which we defined as providing a preventive measure, treatment. or service to a child or a parent, or whether they were nontherapeutic, which included epidemiologic data, determinations of attitudes and beliefs, and diagnostic tests and data obtained during routine well-child visits that did not include referral or therapy. We documented 1 subset to therapeutic and 1 to nontherapeutic research. We documented phase III clinical trials separately from therapeutic research given the NIH mandate that specifically addressed the need for subset analyses in such trials.2,6 We also documented whether the nontherapeutic research involved invasive means. Finally, we coded articles for up to 3 topics that were addressed (>30 medical topics were enumerated). We then reviewed all articles that coded for a potentially stigmatizing research (PSR) topic (topics included were child abuse and neglect, human immunodeficiency virus, psychiatric issues, and high-risk behaviors).
Data were analyzed using the computer programs Excel and SPSS 11.0.1 for Windows. Statistical significance for R/E in various types of research was calculated by 
2 2 x 4 tables. We set the 
level at 0.01 to be conservative in light of the multiple tests and the large sample sizes. Approval from the University of Chicago Institutional Review Board for the project and for waived written consent was obtained before any of the authors of the articles were contacted.
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RESULTS |
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TOPABSTRACTMETHODSRESULTSDISCUSSIONCONCLUSIONSREFERENCES |
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Overall, 526 studies were examined and 192 studies qualified for additional study. A total of 167 of the studies involved child subjects, and 57 involved adult subjects. Four articles (involving 1423 subjects) had subjects ranging from early childhood into young adulthood, and all of the subjects were considered children for the purpose of analysis because the breakdown of child versus adult subjects was not available. One article (involving 190 subjects) examined the use of the Internet for health information by parents and adolescents over age 16, and they are classified as adults for the purpose of analysis because the breakdown was not available.
The average number of subjects analyzed in the studies was 575 and ranged from 8 to 6982. In one study, we used the R/E data of subjects recruited (n = 1840), as the R/E data of the subjects analyzed (n = 1649) was described only as "proportional." R/E data were reported in 114 studies, and survey data provided additional or new information on 25 studies such that we have R/E data on 128 (67%) articles.
Race and ethnicity of subjects were described by >10 different labels. In Table 1, the number of studies in which some of the more common labels used in the article is provided. Of note is that Hispanic subjects were considered a race in some studies and an ethnicity in others. In studies in which Hispanic is considered an ethnicity (n = 5), the subjects are also counted by their race, so 544 child subjects and 436 adult subjects are counted twice. In 23 studies, some subjects were classified as nonwhite or nonblack, but we made no assumption about what the race of these subjects were, and we classified them as "other." When the researchers were asked to clarify their data, they often responded that the subjects were predominantly black and white, respectively, but unless the researchers could give an exact breakdown of the racial identity of the few who were not, the data were not used in our tabulation of subjects by race (Table 2). They account for 2702 (<5%) child subjects and 398 (<2%) adult subjects.
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Table 2 provides a breakdown of the number and percentage of studies and subjects about which we have R/E data overall as well as in different subsets of research: therapeutic studies, clinical trials, nontherapeutic studies, nontherapeutic studies involving invasive methods, and studies involving PSR. The first row gives the number of studies and the number and percentage of studies for which R/E data are available. Nontherapeutic studies account for approximately two thirds of the articles eligible for review, most (89%) of which did not involve invasive methods. Overall, there are R/E data for two thirds of the studies.
The second and third rows state the number of subjects and the number and percentage of subjects for whom R/E data are available, involving all subjects (children and parents) in row 2 and only children in row 3. Overall, there are R/E data for approximately 75% of the subjects. R/E data are available for most PSR studies (85%). Although there are data for only 64% of nontherapeutic studies using invasive methods, the data account for >86% of the subjects.
Table 3 provides an overall account of the study population, breaking it down into child subjects, adult (parent) subjects, and all (parent and children) subjects by R/E using 6 labels: white, black, Asian, Native American, other races, and Hispanic race or ethnicity. Other races represent a conglomeration of subjects labeled in the research as "other," "mixed," "not white," and "not black." Table 3 provides a breakdown of the number and percentage of each group’s participation in research compared with their percentage representation in the census (for all people living in the United States younger than 18 years, older than 18 years, and in aggregate).14 Our study data uses a 1-question format and totals 100%; the census uses a 2-question format such that racial data add up to 100% and Hispanic or Latino origin is counted separately.13 The majority of subjects are white (55%), although lower than the percentage in the population (73%). Blacks and other are overrepresented in the research data compared with the census data, whereas Hispanics and Asians are underrepresented and Native Americans are represented equal to their percentage in the population. However, the numbers of Asian and Native American research subjects are so small that we have grouped them with other and we have not examined them further.
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Table 4 examines R/E data of child subjects for all research and for the subsets of research enumerated in Table 2. The differences between R/E groups were statistically significant for each type of research by
2 at P < .01. Compared with the census data given in Table 3, white and Hispanic children are underrepresented for every type of research except that Hispanic children are represented proportionately to their percentage in the population in PSR. In contrast, black children are always overrepresented. Compared with their participation in research generally (first column of Table 4), white children are overrepresented and black and Hispanic children are underrepresented in therapeutic research. However, black children are overrepresented and white and Hispanic children are underrepresented in phase III clinical trials. In contrast, white children are overrepresented in nontherapeutic research involving invasive methods. The most significant difference, however, occurs in research involving PSR in which white subjects are significantly underrepresented and black and Hispanic subjects are significantly overrepresented compared with their participation in research generally and compared with their representation in the census.
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DISCUSSION |
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TOPABSTRACTMETHODSRESULTSDISCUSSIONCONCLUSIONSREFERENCES |
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In 1984, Cooper wrote that the "use of the category of race in epidemiologic research presupposes scientific validity for a system that divides man into subspecies."15 Despite wide support that race is a social construct and not a biological concept,16–18 the use of variables encoding racial/ethnic categorizations has increased during the past 15 years.19 The NIH require the collection of R/E data, and R/E are often included as demographic data in medical research. We found that more than two thirds of the researchers had collected R/E data and approximately 60% reported it.
Since 1977, there are federal standards meant to standardize data collection and publication among federal agencies (Office of Management and Budget directive 15),11 revised most recently in 1997,12 but there is wide variation in standards used by local, state, and national government agencies.20 The federal standards are used by the NIH for federally conducted data collection, but they are not mandated for use in externally funded research and there is wide variation and no standardization for reporting such data in medical journals.21 Studies examining R/E data for medical and public health uses show that the collection of R/E data is inconsistent, and the accuracy is indeterminate.8,22,23 Our data found that different articles used different classifications.
The articles that we analyzed were written before peer recommendations in leading pediatric journals to collect data that might help to determine the underlying mechanisms by which R/E lead to differences in health care and health care access.24–26 Elsewhere, we have shown that fewer than half of the articles in 3 leading pediatric journals during this time period reported any socioeconomic markers and <40% report both R/E and other socioeconomic markers.27
Despite an extensive literature to show that minorities are underrepresented in medical research,3,4,8 there are scant data regarding minority children. Our data found that black children are overrepresented in medical research overall. The overrepresentation of black children in pediatric research stands in acute contrast with their decreased access to pediatric health care services, even when they have the same health care insurance.28–32
In contrast, Hispanic children and their parents are underrepresented, although there are many reasons that the data may be inaccurate. First, R/E data may be collected using a 1- or 2-question format. The problem with the 2-question format is that some researchers may not collect data on Hispanic participation as they may decide to collect only race (often collecting only white or black race without defining the rest of the population, or lumping them in the category of "other").33 R/E data collection is also complicated by the fact that within the Hispanic and Latino community, there are different attitudes about how to classify themselves in the 1-question format. As such, Hispanics may be undercounted because of the lack of consistency in reporting, because Hispanics may classify themselves differently for different purposes, and it is unclear how they would classify themselves or how researchers would classify them, in the various research studies published.33 Hispanics may also be underrepresented because most research excludes those who do not speak English.34 Not to lose any possible reporting of Hispanic subjects, we double-counted subjects of Hispanic ethnicity by categorizing them as Hispanics, although they were also classified as a race by the researchers. This accounted for only 1% of all the subjects and <10% of all child subjects categorized as Hispanics.
Given the higher baseline participation of black children and their parents, it is important to consider whether their participation is proportionate in all types of research or whether there are types of research in which they are relatively under- or overrepresented. We looked only for large differences because of the fluctuation of children labeled as other, which may explain some of the smaller discrepancies. In our study, we found that black children are overrepresented and white and Hispanic children are underrepresented in phase III clinical trials. Our comparisons of over- and underrepresentation are to the census and to the population of research subjects as a whole. It would be more accurate to compare participation of research subjects to the percentage of individuals with a particular condition. For example, Bleyer et al35 examined pediatric cancer clinical trials between January 1, 1991, and June 30, 1994, and found representation of black and Hispanic children equal or greater than expected. In part, this finding can be explained by the fact that the 2 pediatric cancer research cooperatives registered >90% of children who were younger than 15 years and had a diagnosis of cancer such that research participation mirrors disease prevalence. Unfortunately, unless the data for a particular condition are national in scope, the comparison would also need to correct for the sites in which the research took place (eg, if cancer research were being done in Utah, where the minority population is low, then one could not expect 10% of the subjects to be black children). Our data set was too small for any particular condition to perform such analyses. Still, our data suggest that black children do have fair access to the potential benefits of clinical trials, although Hispanic children may not.
When one considers all therapeutic research, however, black and Hispanic children are underrepresented relative to their participation in research overall, although blacks are overrepresented in this research in comparison with their percentage in the US census. We have no data to explain why black families take advantage of clinical trials but not of therapeutic research more generally. The problem may be at the stage of recruitment, enrollment, or retention, and additional studies are needed to determine the cause.
Finally, we found that black and Hispanic children are overrepresented in research on PSR compared with their participation in research generally. It is the only subgroup of research in which Hispanic participation equaled their representation in the census. One concern is that the researchers may be using race as a proxy for other social factors such as low socioeconomic status and social disempowerment.18,32,36,37 There are some data to show selection bias in child abuse studies,38–41 and a tendency for making comparisons between black and white patients for diseases and conditions associated with promiscuity, underachievement, and antisocial behavior.36 Alternatively, it may be that there is some overrepresentation of minority children in certain conditions categorized as PSR (eg, 82% of all reported pediatric acquired immunodeficiency syndrome cases are in black and Hispanic children42) such that the overrepresentation of minority children in PSR is epidemiologically proportional to the diseases and conditions. Again, our sample was too small to do any additional analyses.
There are several limitations to our study. First, we had data for only three quarters of the subjects who participated in the research. This number, however, compares favorably with other attempts to study R/E.22,23,27 Second, we found that when R/E is reported, there is ambiguity about how the information was obtained and lack of uniformity in the reporting of such data. This is particularly problematic for Hispanic ethnicity data given the variability offered by the 1- and 2-question formats. Third, we examined the R/E only of subjects who were enrolled in research that was published. Clearly, much research that is done does not get published, and it is unclear whether the populations in published research are similar to the populations in unpublished research. Fourth, we focused on the R/E breakdown of the subjects who were analyzed in the research. One would want to know whether high minority participation rates are attributable to 1) overrecruitment of minorities for research; 2) a greater likelihood of enrolling, if recruited; or 3) a greater likelihood of completing the research once enrolled. Unfortunately, the number and R/E breakdown of subjects who were recruited and enrolled were rarely and inconsistently reported,43 despite the recommendations by Consolidated Standards of Reporting Trials (CONSORT).44,45 Other data about minority mistrust of research participation3,46–49 and difficulty in retention once recruited,3,48 however, suggest that the first explanation is most likely. Still, additional empirical data in pediatric research are needed.
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CONCLUSIONS |
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TOPABSTRACTMETHODSRESULTSDISCUSSIONCONCLUSIONSREFERENCES |
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Although there is extensive documentation that minority adults are underrepresented in medical research, we found an overrepresentation of black children and their parents in research and an underrepresentation of Hispanic children and their parents, although there are many problems with the data collected about Hispanics. Clearly, additional study of the participation of minority children in research is needed.
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ACKNOWLEDGMENTS |
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Ms Walsh was funded under the auspices of the Pritzker Summer Research Program, which receives support from the University of Chicago Office of Medical Education and the NIH. Ms Walsh was also supported by the MacLean Center for Clinical Medical Ethics, University of Chicago. Dr Ross’s work on research ethics is currently funded by a National Library Medicine Grant, Children in Medical Research: Ethical and Policy Challenges, NIH 1 G13 LM07472-01.
We thank Carol Stocking, PhD, M. Justin Coffey, and Caleb Alexander. Preliminary data from this research were presented at the Pritzker Medical Student Summer Research Conference and to the members of the Research-in-Progress working group, Section of General Internal Medicine and Department of Health Studies, University of Chicago, who helped with statistical analysis.
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FOOTNOTES |
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Received for publication Dec 17, 2002; Accepted Mar 31, 2003.
Address correspondence to Lainie Friedman Ross, MD, PhD, Department of Pediatrics, University of Chicago, 5841 S Maryland Ave, MC 6082, Chicago, IL 60637. E-mail: lross{at}uchicago.edu
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REFERENCES |
|---|
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TOPABSTRACTMETHODSRESULTSDISCUSSIONCONCLUSIONSREFERENCES |
|---|
- National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research. Belmont Report: Ethical Principles and Guidelines for the Protection of Human Subjects of Research. Washington, DC: US Government Printing Office; 1979
- Department of Health and Human Services (HHS) Public Health Service (PHS) National Institutes of Health (NIH). RIN 0905-ZA18, NIH Guidelines on the inclusion of women and minorities as subjects in clinical research, part VIII, Monday. Fed Reg.1994; 59 :14508 –14513
- 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 the Medically Underserved. Washington, DC: National Academy Press; 1999
- 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
[Abstract/Free Full Text] - US Food and Drug Administration. Guideline for the study and evaluation of gender differences in the clinical evaluation of drugs; notice. Fed Reg.1993; 58 :39406 –39416
- National Institutes of Health. Policy and Guidelines on the Inclusion of Children as Participants in Research Involving Human Subjects. Available at: http://grants.nih.gov/grants/guide/notice-files/not98-024.html. Accessed December 1, 2002
- National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research. Report and Recommendations: Research Involving Children. Washington, DC: US Government Printing Office; 1977
- 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 :18S –24S. Reprinted with permission on the web at: http://www.fda.gov/cder/reports/race ethnicity/race ethnicity report.htm[Medline]
- Health Information Portability and Accountability Act P.L. No. 104-91, 110 Stat. 1936 (1996)
- Weil E, Nelson RM, Ross LF. Are research ethics standards satisfied in pediatric journal publications?
Pediatrics.2002; 110
:364
–370
[Abstract/Free Full Text] - Race and Ethnic Standards for Federal Statistics and Administrative Reporting, Directive No. 15. Washington, DC: Office of Management and Budget; 1977. A copy of this directive can be found as appendix 1 to the Executive Office of the President, Office of Management and Budget, Office of Information and Regulatory Affairs. Recommendations From the Interagency Committee for the Review of the Racial and Ethnic Standards to the Office of Management and Budget Concerning Changes to the Standards for the Classification of Federal Data on Race and Ethnicity. Fed Reg.1997; 62 :36874 –36946
- Executive Office of the President, Office of Management and Budget. Revisions to the standards for the classification of federal data on race and ethnicity. Fed Reg.1997; 62 :58782 –58790
- US Census Bureau. Population Estimates: Race/Ethnicity. Available at: http://eire.census.gov/popest/data/race.php. Accessed December 2, 2002
- US Census Bureau. Census 2000 PHC-T-9. Population by Age, Sex, Race, and Hispanic or Latino Origin for the United States; 2000. Available at: http://www.census.gov/population/cen2000/phc-t9/tab01.pdf. Accessed March 26, 2003
- Cooper R. A note on the biologic concept of race and its application in epidemiologic research. Am Heart J.1984; 108 :715 –722[CrossRef][Web of Science][Medline]
- American Anthropological Association Statement on "Race." Available at: http://www.aaanet.org/stmts/racepp.htm. Accessed November 23, 2002
- Lewontin RC, Rose S, Kamin LJ. Not in Our Genes: Biology, Ideology and Human Nature. New York, NY: Pantheon Books; 1984
- Goodman AH. Why genes don’t count (for racial differences in health).
Am J Public Health.2000; 90
:1699
–1702
[Abstract/Free Full Text] - Kaufman JS, Cooper RS. Commentary: considerations for use of racial/ethnic classification in etiologic research.
Am J Epidemiol.2001; 154
:291
–298
[Abstract/Free Full Text] - Westermeyer J. A problem with surveillance methods for alcoholism: differences in coding system among federal, state, and private agencies.
Am J Public Health.1988; 78
:130
–133
[Abstract/Free Full Text] - International Committee of Medical Journal Editors. Uniform requirements for manuscripts submitted to biomedical journals.
Ann Intern Med.1997; 126
:36
–47
[Free Full Text] - Reporting of race and ethnicity in the National Notifiable Diseases Surveillance System, 1990. MMWR Morb Mortal Wkly Rep.1992; 41 :653 –657[Medline]
- Centers for Disease Control and Prevention. Reporting race and ethnicity data—National Electronic Telecommunications System for Surveillance, 1994–1997. MMWR Morb Mortal Wkly Rep.1999; 48 :305 –312[Medline]
- Editors. Race, ethnicity and nationality. Paediatr Perinat Epidemiol.2000; 14 :4 –13[CrossRef][Web of Science][Medline]
- American Academy of Pediatrics, Committee on Pediatric Research. Race/ethnicity, gender, socioeconomic status—research exploring their effects on child health: a subject review.
Pediatrics.2000; 105
:1349
–1351
[Abstract/Free Full Text] - Rivara FP, Finberg L. Use of the terms race and ethnicity.
Arch Pediatr Adolesc Med.2001; 155
:119
[Free Full Text] - Walsh CA, Ross LF. Whether and why pediatric researchers report race and ethnicity.
Arch Pediatr Adolesc Med.2003; 157
:671
–675
[Abstract/Free Full Text] - Orr ST, Miller CA, James SA. Differences in use of health services by children according to race: relative importance of cultural and system-related factors. Med Care.1984; 22 :848 –853[CrossRef][Web of Science][Medline]
- Flores G, Bauchner H, Feinstein AR, Nguyen US. The impact of ethnicity, family income, and parental education on children’s health and use of health services.
Am J Public Health.1999; 89
:1066
–1071
[Abstract/Free Full Text] - Marsha Lillie-Blanton, Catherine Hoffman. Foreword.
Med Care Res Rev.2000; 57(suppl 1)
:5
–10
[Free Full Text] - Weinick RM, Zuvekas SH, Cohen JW. Racial and ethnic differences in access to and use of health care services, 1977 to 1996.
Med Care Res Rev.2000; 57(suppl 1)
:36
–54
[Abstract/Free Full Text] - Weitzman M, Byrd RS, Auinger P. Black and white middle class children who have private health insurance in the United States.
Pediatrics.1999; 104(suppl)
:151
–157
[Abstract/Free Full Text] - Flores G, Fuentes-Afflick E, Barbot O, et al. The health of Latino children: urgent priorities, unanswered questions, and a research agenda.
JAMA.2002; 288
:82
–90
[Abstract/Free Full Text] - Frayne SM, Burns RB, Hardt EJ, Rosen AK, Moskowitz MA. The exclusion of non-English-speaking persons from research. J Gen Intern Med.1996; 11 :39 –43[Web of Science][Medline]
- Bleyer WA, Tejeda H, Murphy SB, Brawley OW, Smith MA, Ungerleider RS. Equal participation of minority patients in U.S. national pediatric cancer clinical trials. J Pediatr Hematol Oncol.1997; 19 :423 –427[CrossRef][Web of Science][Medline]
- Osborne NG, Feit MD. The use of race in medical research.
JAMA.1992; 267
:275
–279
[Abstract/Free Full Text] - Jones CP. Levels of racism: a theoretic framework and a gardener’s tale.
Am J Public Health.2000; 90
:1212
–1215
[Abstract/Free Full Text] - Ards S, Chung C, Myers SL Jr. The effects of sample selection bias on racial differences in child abuse reporting. Child Abuse Negl.1998; 22 :103 –115[CrossRef][Web of Science][Medline]
- Lane WG, Rubin DM, Monteith R, Christian CW. Racial differences in the evaluation of pediatric fractures for physical abuse.
JAMA.2002; 288
:1603
–1609
[Abstract/Free Full Text] - Kenny MC, McEachern AG. Racial, ethnic, and cultural factors of childhood sexual abuse: a selected review of the literature. Clin Psychol Rev.2000; 20 :905 –922[CrossRef][Web of Science][Medline]
- Powers JL, Eckenrode J. The maltreatment of adolescents. Child Abuse Negl.1988; 12 :189 –199[CrossRef][Web of Science][Medline]
- Centers for Disease Control and Prevention. HIV/AIDS Surveillance by Race/Ethnicity. Available at: http://www.cdc.gov/hiv/graphics/images/1238/1238-3.htm. Accessed December 4, 2002
- Gross CP, Mallory R, Heiat A, Krumholz HM. Reporting the recruitment process in clinical trials: who are these patients and how did they get there?
Ann Intern Med.2002; 137
:10
–16
[Abstract/Free Full Text] - Begg C, Cho M, Eastwood S, et al. Improving the quality of reporting of randomized controlled trials. The CONSORT statement.
JAMA.1996; 276
:637
–639
[Abstract/Free Full Text] - Moher D, Schulz KF, Altman DG. The CONSORT statement: revised recommendations for improving the quality of reports of parallel-group randomised trials. Lancet.2001; 357 :1191 –1194[CrossRef][Web of Science][Medline]
- Corbie-Smith G, Thomas SB, Williams MV, Moody-Ayers S. Attitudes and beliefs of African Americans toward participation in medical research. J Gen Intern Med.1999; 14 :537 –546[CrossRef][Web of Science][Medline]
- Kressin NR, Meterko M, Nancy J Wilson NJ. Racial disparities in participation in biomedical research. J Natl Med Assoc.2000; 92 :62 –69[Medline]
- 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 :S22 –S34[CrossRef][Web of Science][Medline]
- Shavers-Hornaday VL, Lynch CF, Burmeister LF, Torner JC. Why are African Americans under-represented in medical research studies? Impediments to participation. Ethn Health.1997; 2 :31 –45[Medline]
PEDIATRICS (ISSN 1098-4275). ©2003 by the American Academy of Pediatrics
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