Charting the future of cancer health disparities research: A position statement from the American Association for Cancer Research, the American Cancer Society, the American Society of Clinical Oncology, and the National Cancer Institute

Tumor Specimen Biobanks: Data Gaps for Analyzing Health Inequities—the Case of Breast Cancer

“…For example, recent research in the United States has shown that understanding the etiology of, and temporal changes in, differences in breast cancer estrogen receptor status among US black and white women requires data on not only race/ethnicity and socioeconomic position but also time and place of birth in relation to the pre-1965 existence of legal racial discrimination ("Jim Crow") in the District of Columbia and 21 of the 50 US states (11-15). The welldocumented need for socioeconomic, sociodemographic, and geographic data (eg, neighborhood characteristics, urban vs rural location) to analyze cancer inequities (6,7,16,17), however, remains largely unaddressed in the literature on minimum data sets for biospecimen repositories (1)(2)(3)(18)(19)(20)(21).Motivated by our prior US-based research on assessing the feasibility of analyzing long-term trends in disparities in breast cancer biomarkers using archival tissue specimens (22,23), we sought to assess the feasibility of using tumor biobank data for research on cancer inequities and their trends over time. Our a priori hypotheses were that most biobanks 1) would not routinely collect socioeconomic, sociodemographic, or geographic data needed to quantify cancer inequities and 2) would primarily include specimens only from the Global North, with few specimens available before the 1990s.…”

“…Also needed are the social data used to characterize and quantify the inequities (6)(7)(8), that is, group differences in health that are unfair, unnecessary, and in principle preventable (8)(9)(10). For example, recent research in the United States has shown that understanding the etiology of, and temporal changes in, differences in breast cancer estrogen receptor status among US black and white women requires data on not only race/ethnicity and socioeconomic position but also time and place of birth in relation to the pre-1965 existence of legal racial discrimination ("Jim Crow") in the District of Columbia and 21 of the 50 US states (11)(12)(13)(14)(15).…”

“…Supporting our a priori hypotheses, few biobanks included the social and geographic data required to analyze cancer inequities and their trends (6)(7)(8)(11)(12)(13)(14)(15)(16)(17)(29)(30)(31). Raising concerns about continuing the racialization of cancer data (6)(7)(8)32), among the 32 biobanks we surveyed with breast cancer tissue specimens available for use in research studies, 63% obtained racial/ethnic data (with two using the scientifically invalid and discredited spurious category of "Caucasian" [32][33][34][35]), only 31% had socioeconomic data, and only 28% had both racial/ethnic and socioeconomic data.…”

“…Raising concerns about continuing the racialization of cancer data (6)(7)(8)32), among the 32 biobanks we surveyed with breast cancer tissue specimens available for use in research studies, 63% obtained racial/ethnic data (with two using the scientifically invalid and discredited spurious category of "Caucasian" [32][33][34][35]), only 31% had socioeconomic data, and only 28% had both racial/ethnic and socioeconomic data. The majority (>55%) also lacked geographic data.…”

“…In summary, for biobanks to enable research to address cancer inequities (6)(7)(8)(11)(12)(13)(14)(15)(16)(17)29,32), the social data gaps we document require remedy. Greater expansion of the time frame also warrants support, given evidence of long-term trends and variations in the magnitude of cancer inequities (12,14,(28)(29)(30)(31).…”