Reporting of Race and Ethnicity in the Ophthalmology Literature in 2019

Key Points

Question

How were race and ethnicity reported in the ophthalmology literature in 2019?

Findings

In this cross-sectional study of all full-length articles with human participants published in the American Journal of Ophthalmology, JAMA Ophthalmology, and Ophthalmology in 2019, 484 of 547 articles (88%) included patient age and sex but only 233 (43%) included race and/or ethnicity data. The categorizations varied, with 78 different races and/or ethnicities described; only 30 articles (13%) indicated how these data were obtained.

Meaning

These findings suggest that the reporting and use of racial and ethnic data in the ophthalmic literature are limited and inconsistent.

Abstract

Importance

The description of racial and ethnic data in human trials is relatively unregulated, leading to potential confusion with and inconsistent reporting of these data.

Objective

To determine the frequency and use of racial and ethnic data in the ophthalmology literature in 2019.

Design, Setting, and Participants

This cross-sectional study included all full-length human studies published between January and December 2019 in the American Journal of Ophthalmology, JAMA Ophthalmology, and Ophthalmology.

Main Outcomes and Measures

Whether race or ethnicity was included in the data or analysis, how the categorization was described in the methods and results, specific racial and ethnic categories used, and whether and how the categories were determined.

Results

A total of 547 articles were identified during the study period, 484 (88% ± 2.7%) of which reported background demographic information, including patient age and sex. Only 233 (43% ± 4.1%) reported race and/or ethnicity. Of those articles, 72 (31% ± 5.9%) categorized it as race, 51 (22% ± 5.3%) ethnicity, 56 (24% ± 5.4%) race/ethnicity, 21 (9% ± 3.7%) race and ethnicity, 12 (5% ± 3.0%) descent, 12 (5% ± 2.9%) population, and 5 (2% ± 2.0%) ancestry; in 21 (9% ± 3.8%) it was not defined. Only 30 studies (13% ± 4.4%) described how it was determined in the methods or results, most frequently by self-report (77% ± 3.9%). A total of 78 races and/or ethnicities were defined.

Conclusions and Relevance

While most articles during the study period reported background demographic information, few included race and ethnicity and only a fraction of those described how these data were determined. The categories used were heterogeneous and often inconsistent. These findings suggest the need for increased and more standardized reporting of ethnic and racial demographic data in the ophthalmology literature.

This cross-sectional study examines the frequency and use of racial and ethnic data in the ophthalmology literature in 2019.

Introduction

The use of race and ethnicity in the medical literature is historically and currently controversial, with a still unresolved debate over the biological nature of these constructs.¹ Many governing bodies, including the National Institutes of Health (NIH),² consider these classifications as sociopolitical rather than anthropologic. Regardless, there remain well-documented health care inequities on the basis of race and ethnicity,³ hence the importance of reporting these variables in clinical studies, as evidenced by the requirement for NIH-funded studies to describe racial and ethnic groups in the study population.² Similarly, the International Committee of Medical Journal Editors (ICMJE) states “[a]uthors should define how they determined race or ethnicity and justify their relevance.”⁴

Beyond the nature of these categories, there exists further controversy on their definitions.⁵ The American Medical Association defines race as “a category of humankind that shares certain distinctive physical traits” and ethnicity as “a group of people classified according to common racial, national, tribal, religious, linguistic, or cultural origin or background.”⁶ Similar to the US Census Bureau,⁷ the NIH adheres to the US Office of Management and Budget Directive No. 15 standards of race and ethnicity, defining ethnicity as 1 of 2 categories—Hispanic/Latino and not Hispanic/Latino—and race as 1 of 5 categories: American Indian/Alaska Native, Asian, black/African American, Native Hawaiian/other Pacific Islander, and white.⁸

Despite these and other recommendations, a recent study of articles reporting on race and/or ethnicity in the top 10 ranking academic medical journals in surgery, medicine, and oncology found there were numerous and imprecise classifications documented that were often open to interpretation.⁵ To offer context in our field, this study determined the frequency and use of race and ethnicity in the ophthalmology literature in 2019 using the 3 comprehensive ophthalmology journals with the highest impact factor: American Journal of Ophthalmology, JAMA Ophthalmology, and Ophthalmology.

Methods

All articles from the American Journal of Ophthalmology, JAMA Ophthalmology, and Ophthalmology during the 12 months between January and December 2019 were reviewed. Only full-length articles were included; any correspondence, editorials, nonhuman studies, case reports, or other articles without an abstract were excluded. Data collected from reviewed articles included (1) whether study population race or ethnicity was included in the data collection, analysis, or discussion; (2) how the categorization was described in the methods, tables, figures, and/or results (ie, race, ethnicity, both as separate categories, both as a single category of race/ethnicity, population, ancestry, descent, or not classified); (3) specific racial and ethnic categories reported; (4) whether and how the categories were determined in the abstract, methods, or results (ie, none provided, self, study personnel, or parent/caregiver); (5) whether the study reported funding from the NIH and/or included patient population(s) from the US; and (6) whether other demographic information was described in the article, including at a minimum age and sex of the study population. Data were collected and analyzed in Microsoft Excel. Estimates of uncertainty are presented using 95% confidence intervals.

Results

A total of 547 manuscripts were identified across the 3 journals and study period (eTable 1 in the Supplement). Of those, 484 (88% ± 2.7%) included age and sex and 233 (43% ± 4.1%) included race and/or ethnicity of the study population in the methods, results, and/or discussion. Of the 233 articles that included race and/or ethnicity, 73 (31% ± 5.9%) categorized it as race, 52 (22% ± 5.3%) ethnicity, 55 (24% ± 5.4%) race/ethnicity, 20 (9% ± 3.7%) race and ethnicity, 12 (5% ± 3.0%) descent, 11 (5% ± 2.9%) population, and 4 (2% ± 2.0%) as ancestry; in 21 (9% ± 3.8%) it was not defined. (Table 1 and eTable 2 in the Supplement).

Table 1. Race and/or Ethnicity Data Identified in 2019.

Characteristic	Overall, No. (%)
No. of articles	547
Race/ethnicity reported	233 (43)
Other demographics reporteda	484 (88)
How classifiedb
Race	73 (31)
Ethnicity	52 (22)
Race/ethnicity	55 (24)
Race and ethnicity	20 (9)
Descent	12 (5)
Population	11 (5)
Ancestry	4 (2)
Not classified	21 (9)
How determined	30 (13)
Self-reportc	23 (77)
Parent/caregiverc	3 (10)
National registration identity cardc	1 (3)
Parent birth countryc	1 (3)

^aOther demographics included at a minimum age and sex.

^bSome articles listed multiple classifications.

^cPercentage of 30 articles that reported how racial and/or ethnic categories were determined.

Of the 233 articles that included race and/or ethnicity, only 30 (13% ± 4.4%) described how it was determined in the methods or results. Of these, 23 (77% %± 3.9%) were by self-report, 3 (10% ± 1.8%) by parent/caregiver, 1 (3% ± 1.4%) by National Registration Identity Card, and 1 (3% ± 1.4%) by parent birth country (Table 1 and eTable 2 in the Supplement).

A total of 78 races and/or ethnicities were defined in the 233 articles. The most frequent categories were white/Caucasian (158 [68% ± 6.0%]), black/African American (132 [57% ± 6.3%]), other (90 [39% ± 6.2%]), Asian (75 [32% ± 6.0%]), Hispanic (55 [24% ± 5.4%]), unknown (34 [15% ± 4.6%]), and multiple/mixed (24 [10% ± 4.0%]) (Table 2 and eTable 3 in the Supplement).

Table 2. Races and/or Ethnicities Reported.

Race/ethnicity	No. (%)
	Overall	NIH and/or US populationa
White/Caucasian	158 (68)	133 (84)
Black/African American	132 (57)	122 (92)
Other	90 (39)	78 (87)
Asian	75 (32)	58 (77)
Hispanic	55 (24)	54 (98)
Unknown	34 (15)	29 (85)
Multiple/mixed	24 (10)	19 (79)
American Indian/Alaskan Native	16 (7)	16 (100)
Not Hispanic/Latino	15 (6)	15 (100)
Hispanic/Latino	14 (6)	14 (100)
Chinese	12 (5)	0
Non-Hispanic white	11 (5)	11 (100)
European descent	10 (4)	4 (40)
Indian	9 (4)	2 (22)
East Asian	7 (3)	3 (43)
Native Hawaiian/other Pacific Islander	7 (3)	7 (100)
Hispanic white	6 (3)	6 (100)
Latino	6 (3)	6 (100)
Malay	6 (3)	0
Asian/Pacific Islander	5 (2)	5 (100)
African descent	5 (2)	2 (40)
European white	5 (2)	2 (40)
Native American	5 (2)	5 (100)
Non-Hispanic black	5 (2)	5 (100)
Nonwhite	5 (2)	3 (60)
Korean	4 (2)	0
Middle Eastern	4 (2)	3 (75)
South Asian	4 (2)	2 (50)
Korean/South Korean	3 (1)	0
Non–African American	3 (1)	3 (100)
Russian	3 (1)	1 (33)
Aboriginal/Torres Strait Islander/Polynesian	2 (1)	0
Anglo-Europeans	2 (1)	1 (50)
Black/black British	2 (1)	0
Black African/West African	2 (1)	0
Black Caribbean	2 (1)	1 (50)
Former USSR	2 (1)	0
Israel	2 (1)	0
Mexican American	2 (1)	2 (100)
Middle Eastern/North African	2 (1)	2 (100)
Mixed white and black African	2 (1)	0
Non-Chinese	2 (1)	0
Aboriginal	1 (1)	0
American	1 (1)	0
Any other white background	1 (1)	0
Arabic or Middle Eastern	1 (1)	0
Asian/Asian British	1 (1)	0
Asian/Indian	1 (1)	1 (100)
Bangladeshi	1 (1)	0
Bashkirs	1 (1)	0
Caucasian born in the US	1 (1)	1 (100)
Chinese American	1 (1)	1 (100)
East Indian	1 (1)	1 (100)
Ethiopian	1 (1)	0
German	1 (1)	1 (100)
Greek	1 (1)	0
Han-Chinese	1 (1)	0
Indian or British Indian	1 (1)	0
Indian or Pakistani	1 (1)	0
Japanese	1 (1)	0
Lebanese	1 (1)	1 (100)
Mediterranean	1 (1)	1 (100)
Non-European	1 (1)	0
North Africa	1 (1)	0
Not Hispanic/Latino, not Middle Eastern/North African, not Indian Subcontinent	1 (1)	1 (100)
Oceania	1 (1)	0
Other Hispanic	1 (1)	1 (100)
Pacific Islander	1 (1)	1 (100)
Pakistani	1 (1)	0
Portuguese	1 (1)	1 (100)
Saudi Arabian	1 (1)	0
Taiwanese	1 (1)	0
Tatars	1 (1)	0
Thai	1 (1)	0
Ukrainians	1 (1)	0
Western countries	1 (1)	0
White British	1 (1)	0
White including Hispanic/Latino	1 (1)	1 (100)

Abbreviations: NIH, National Institutes of Health; USSR, Union of Soviet Socialist Republics.

^aPercentage of articles reporting funding from the NIH and/or US patient populations compared with all articles in that category.

One hundred sixty-seven of the 233 articles (71.7% ± 5.8%) reported funding from the NIH and/or included patient populations from the US (Table 2 and eTables 2 and 3 in the Supplement). Of the 5 race and 2 ethnic categories defined by the NIH,² the races were classified specifically as ethnicity in 32 of 192 articles (17% ± 5.3%), 14 (43% ± 16.3%) of which reported funding from the NIH and/or included patient populations from the US. The ethnicity Hispanic/Latino was classified as a race in 16 of 75 articles (21% ± 9.3%), all (100% ± 9.9%) of which reported funding from the NIH and/or included patient populations from the US (Table 3 and eTable 4 in the Supplement).

Table 3. How National Institutes of Health Classification of Race and Ethnicity Was Reported.

Race or ethnicitya	Overall, No. (%)
	Race	Ethnicity	Race/ethnicity	Descent	Population	Ancestry	Not classified	Total
White/Caucasianb	78 (46)	29 (17)	48 (28)	1 (1)	3 (2)	2 (1)	16 (11)	169
Black/African Americanc	73 (53)	13 (9)	44 (32)	2 (1)	2 (1)	1 (1)	3 (2)	137
Asian	35 (47)	14 (19)	23 (31)	2 (3)	1 (1)	0	0	75
American Indian/Alaskan Natived	14 (67)	1 (5)	5 (24)	1 (5)	0	0	0	21
Native Hawaiian/other Pacific Islander	5 (71)	1 (14)	2 (29)	0	0	0	0	7
Hispanic/Latinoe	16 (20)	24 (30)	34 (42)	1 (1)	0	0	2 (2)	81

^aThe National Institutes of Health defines ethnicity as one of 2 categories—Hispanic/Latino and not Hispanic/Latino—and race as one of 5 categories: American Indian/Alaska Native, Asian, black/African American, Native Hawaiian/Other Pacific Islander, and white.

^bCombined non-Hispanic white with white/Caucasian.

^cCombined non-Hispanic black with black/African American.

^dCombined Native American with American Indian/Alaskan Native.

^eCombined Hispanic, Latino, Hispanic white, and Hispanic/Latino.

Discussion

While the nature of race and ethnicity remains a topic of debate, the importance of reporting these variables is not.³ These data demonstrate most studies (88%) in the 3 largest ophthalmology journals in 2019 describe patient age and sex, but less than half of those (43%) reported on race and/or ethnicity. Very few studies explained how race and/or ethnicity were determined and the categories presented varied and were often inconsistent.

To my knowledge, there is little literature analyzing the reporting of race and ethnicity; however, these results mirror a recent study of the largest journals in medicine, oncology, and surgery.⁵ The authors found that 5% of studies provided a formal definition of race and/or ethnicity, 10% described the methods used to classify individuals, and 81 unique race/ethnicity categories were provided in a total of 995 articles. The search was limited to studies reporting race and ethnicity, so the overall frequency of reporting was not determined. All 30 journals in the article provided specific guidance on the reporting of race and ethnicity and 70% had policies in accordance with ICMJE standards, leading the authors to conclude adherence to published standards is poor.

Similarly, 2 of the 3 ophthalmology journals in the current study are listed as following ICMJE recommendations.⁹ JAMA additionally has specific requirements on the reporting of race and ethnicity for their network journals listed on their website¹⁰ that were further explained in a 2018 Editorial by the journal executive editor and editor in chief.¹ The NIH requires all funded research include racial and ethnic data or provide a rationale why it is excluded and lists specific definitions of categories to report.² The results of this study demonstrate that current measures to monitor and enforce these and other standards are insufficient in the ophthalmology literature. Not only are race and/or ethnicity underreported, but the classification of race, ethnicity, and analogous terms is inconsistent. The specific races and/or ethnicities reported are broad, with 78 different groups identified. Twenty-eight percent of the articles reported race and/or ethnicity on patient populations outside of the US, representing 35 unique categories. This likely reflects the growing global and interconnected nature of the scientific community, adding complexity to current standards.

Conclusions

The reporting of race and/or ethnicity in the 3 largest ophthalmology journals in 2019 was limited and heterogeneous. This provides opportunity for further discussion among stakeholders and the broader community regarding the appropriate inclusion and categorization of patients in ophthalmology research.

Supplement.

eTable 1. References of manuscript identified in 2019

eTable 2. Race and/or ethnicity data identified in 2019

eTable 3. Races and/or ethnicities reported

eTable 4. How National Institutes of Health (NIH) classification of race and ethnicity was reported.