PurposeMinorities are often underrepresented in clinical cancer research yet the frequency of reporting of race in genomic sequencing studies of cancer is unknown. This scoping review determines the rate at which race is reported as a demographic variable, the factors associated with reporting of race, and the participation rates of minority populations.MethodsPubMed was systematically searched from 1 January 2010 through 15 November 2018 and 11,014 studies were assessed for eligibility. Publications reporting genome or exome sequencing data for patients with one of the ten most common cancers in the United States were included.ResultsA total of 231 publications containing sequencing data from 15,721 unique patients met inclusion criteria. Race was reported in 37% of studies compared with 84% of studies reporting age and 85% reporting gender. Reporting of race was associated with cohort size, sequencing method, familial cancer, cancers with disparities, and reporting of age and gender. Minority populations were significantly underpowered to detect recurrent pathogenic variants in most cancers.ConclusionRace is underreported as a demographic variable in genomic sequencing studies of cancer. Substantially increased efforts are needed to sequence patients from underrepresented populations to reduce health disparities in patients of non-European ancestry.
Purpose: Minorities are often underrepresented in clinical cancer research and the frequency of reporting of race in genomic sequencing studies of cancer is unknown. Disproportionate reporting of race can widen health information disparities and impair clinical decision-making in the underrepresented minority populations in whom cancer disease burden is greatest. This study determined the extent to which race is reported as a clinical variable in sequencing studies of cancer in the United States, the factors associated with reporting of race, and the participation rates of minority populations.
Methods: PubMed was systematically searched from January 1, 2010 through November 15, 2018 and a total of 9,410 non-duplicated studies were assessed for eligibility. Publications reporting whole genome or exome sequencing data for patients with one of the ten most common cancers in the United States at sufficient depth to identify rare variants were included in this study.
Results: 234 publications containing sequencing data from 16,358 unique patients met inclusion criteria. 36% of studies reported race as a clinical variable compared to 84% of studies reporting age and 83% of studies reporting gender. Reporting of race was associated with cancer type, cohort size, sequencing method, and tissue acquisition date. Minority populations were significantly underpowered to detect recurrent mutations in the majority of cancer types due to small sample size.
Conclusion: Race is underreported as a clinical variable in whole genome and exome sequencing studies of cancer in the United States. As the patient populations represented in research studies directly inform clinical decision-making and outcomes, substantially increased efforts are needed to sequence patients from underrepresented populations in order to reduce health disparities in patients of non-European ancestry.
Citation Format: Adrienne Nugent, Kelly R. Conatser, Llaran L. Turner, James T. Nugent, Esther May Sarino, Luisel J. Ricks-Santi. Underreporting of race in genomic sequencing studies increases cancer health information disparities [abstract]. In: Proceedings of the American Association for Cancer Research Annual Meeting 2019; 2019 Mar 29-Apr 3; Atlanta, GA. Philadelphia (PA): AACR; Cancer Res 2019;79(13 Suppl):Abstract nr LB-180.
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