UH Med Now
Guidance to address racial and ethnicity factors in scientific research
Date: April 28th, 2022 in Geriatrics, JABSOM News, MINORITY, Native Hawaiian, Native Hawaiian Health, OB-GYN, Research
Race categories have been included in the U.S. Census since 1790 and have changed repeatedly to reflect the politics and social attitudes of the times.
In 1997, the U.S. Federal Office of Management and Budget (OMB) acknowledged that race and ethnicity categories were social-political constructs and not anthropologically or scientifically based. The 1997 OMB Directive No. 15 first separated “Asian” and “Native Hawaiian or Other Pacific Islander.”
In November 2020, the AMA Manual of Style committee revised its entire subsection on race and ethnicity reporting, stating that New AMA policies recognize race as a social, and not a biological construct. However, when the national Women’s Health Initiative (WHI) launched a decades-long study in 1991, limited race and ethnicity categories were available for participants to self-identify; this restriction has tremendous scientific implications for analysis and application of results.
The WHI is a long-term national health study funded by the National Institutes of Health, that included more than 160,000 post-menopausal women aged 50-79 at baseline from 40 clinical sites across the United States – including Hawai’i.
“I have been involved from the start because Hawai’i was one of the 40 clinical sites,” said Dr. Kamal Masaki, professor and chair of the Department of Geriatric Medicine at the John A. Burns School of Medicine (JABSOM).
The WHI was a landmark study of key health issues affecting mid-life to older women, with a strong commitment for equitable inclusion and retention of race and ethnicity groups historically underrepresented in research. In order to achieve a diverse study population, ten of forty centers, including Hawaii, were classified as “minority recruitment centers,” and each center was to enroll at least 60% of their participants from the designated four groups. The other clinical centers were to recruit as many historically underrepresented race and ethnicity groups as they could.
However, only Hawaii was able to meet the enrollment target of at least 60% of the cohort from the following specified racial and ethnic groups: “Native American” (e.g. American Indian/Alaska Native), Asian-American/Pacific Islander (originally announced as a combined category), African-American, and Hispanic. In 2003, a WHI Special Populations Advisory Committee led an effort to collect expanded self-identified race categories to enrolled participants.
Recognizing the challenges related to analyzing and applying findings based on race and ethnicity categories, the Steering Committee convened a Race and Ethnicity Task Force in 2020 to better characterize the WHI cohort and develop recommendations for WHI investigators who want to include “race” and/or “ethnicity” in papers and presentations.
Masaki was part of this important task force that ultimately developed the “WHI Race and Ethnicity Language and Data Interpretation Guide” to support advancements in the study of race and ethnicity in public health research. The charge was to “conduct an evaluation of the data to determine its strength and limitations for providing guidance on language and data interpretation.” A summary of the guide was recently published “Taking action to advance the study of race and ethnicity: the Women’s Health Initiative.”
Recommendations from the WHI Race and Ethnicity Language and Data Interpretation Guide:
In its recommendations, the WHI Race and Ethnicity Task Force states the following: “…inclusive language supports diversity and conveys respect,” whereas, “language that imparts bias toward or against persons or groups on characteristics or demographics perpetuates misinformation and must be avoided.”
Formerly standard and now regarded unacceptable by a large portion of the public today, terms such as negro, colored, oriental, Asiatic, and Caucasian, and others are to be avoided. The Task Force cited 44 references in support of more inclusive terms. Instead of referring to “minorities,” they recommend specifying racial or ethnic minority groups, underserved groups or underrepresented populations – with categories of individuals defined, and that “marginalized groups” may be suitable in certain contexts.
The Task Force also noted that “These terms may not be acceptable to a large segment of the population. Referring to any race or ethnicity as “non-White” is clearly inappropriate, as is the nonspecific group label “other,” unless it was a prespecified formal category in a database or research instrument.” Furthermore, combining specified groups as “other,” for the purpose of increasing statistical power to make a comparison with a larger specified group, requires clear scientific rationale and justification or should not be done.”
As JABSOM’s strategic initiatives include improving health equity for the populations of Hawai’i and the Asia-Pacific region, we are thankful to Dr. Masaki and other faculty leaders for guiding us to help ensure our research, education, clinical, and community programs are designed and implemented through a health equity lens. The paper referenced in this article, and many other resources, guides, and reports, can be found on our JABSOM diversity website.
Paula Bender, UH Med News