How accurately are racial minorities represented in US cancer registration systems?

Analysis reveals disparities despite revisions to established standards for race data collection.

2025-07-21

(Press-News.org) Tracking race-specific rates of cancer incidence and mortality is important for identifying racial differences in these outcomes and for monitoring efforts aimed at achieving the highest level of health for all. Researchers have assessed how well US race data collection standards and their revisions have captured cancer burdens for various racial groups over the years. The findings are published by Wiley online in CANCER, a peer-reviewed journal of the American Cancer Society.

Race data collection has followed recommendations from the US Office of Management and Budget, with collection standards aimed at improving the quality of federal race and ethnicity data established in 1977 and revised in 1997 and 2024. The 1977 standards specified four race categories: White, Black, American Indian or Alaskan Native (AI/AN), and Asian or Pacific Islander (API). The 1997 revision allowed reporting more than one race and recommended separating API into Native Hawaiian or Other Pacific Islander (NHOPI) and Asian. The 2024 revision added a new Middle Eastern/North African category.

Investigators applied the race definitions in 1977 and 1997 to data on cancer incidences from the National Cancer Institute’s Surveillance, Epidemiology, and End Results Program and to cancer deaths recorded in the National Vital Statistics System.

They found that the rates of cancer incidence for White and Black populations under the 1997 standards were similar to those observed under the previous 1977 standards; however, significantly lower rates were observed for AI/AN populations under the 1997 standards compared with the 1977 standards. Mortality rates were similar for White, Black, and AI/AN between the two standards. Under the 1997 standards, incidence and mortality rates for most racial groups were comparable whether multiracial individuals were only included with their primary race category, suggesting that the inclusion of multiracial individuals in the primary race category did not substantially affect the overall rates for these populations. An exception was observed for the NHOPI group, where the rates were lower when multiracial individuals were included.

“The concept of race plays a critical role in cancer prevention, as it interacts with social and environmental factors to influence cancer risk, incidence, treatment, and outcomes,” said corresponding author Mandi Yu, PhD, of the National Cancer Institute. “Enhancing the accuracy of patients’ self-reported racial identification and incorporating multiracial classifications into hospital data collection systems are essential steps for improving the comparability between cancer incidence and census-based population data.”

Additional information
NOTE: The information contained in this release is protected by copyright. Please include journal attribution in all coverage. A free abstract of this article will be available via the CANCER Newsroom upon online publication. For more information or to obtain a PDF of any study, please contact: Sara Henning-Stout, newsroom@wiley.com

Full Citation:
“The Impact of the 1997 OMB Standards for Collecting Multiracial Data on Assessing Race-Specific Cancer Rates of Incidence and Mortality in the United States.” Mandi Yu, Natalie Joe, Recinda L. Sherman, Christopher J. Johnson, Serban Negoita, Steve Scoppa, James (Todd) Gibson, and Kathleen A. Cronin. CANCER; Published Online: July 21, 2025 (DOI: 10.1002/cncr.35930).
URL Upon Publication: http://doi.wiley.com/10.1002/cncr.35930

Author Contact: NIH/NCI communications at NIHPress@nih.gov and ncipressofficers@nih.gov. +1 301-496-5787.

About the Journal    
CANCER is a peer-reviewed publication of the American Cancer Society integrating scientific information from worldwide sources for all oncologic specialties. The objective of CANCER is to provide an interdisciplinary forum for the exchange of information among oncologic disciplines concerned with the etiology, course, and treatment of human cancer. CANCER is published on behalf of the American Cancer Society by Wiley and can be accessed online. Follow CANCER on X @JournalCancer and Instagram @ACSJournalCancer, and stay up to date with the American Cancer Society Journals on LinkedIn.

About Wiley     
Wiley is one of the world’s largest publishers and a trusted leader in research and learning. Our industry-leading content, services, platforms, and knowledge networks are tailored to meet the evolving needs of our customers and partners, including researchers, students, instructors, professionals, institutions, and corporations. We empower knowledge-seekers to transform today’s biggest obstacles into tomorrow’s brightest opportunities. For more than two centuries, Wiley has been delivering on its timeless mission to unlock human potential. Visit us at Wiley.com. Follow us on Facebook, X, LinkedIn and Instagram.

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How accurately are racial minorities represented in US cancer registration systems?

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