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

Abstract

Biobanks are increasingly recognized to be vital for analyzing tumor properties, treatment options, and clinical prognosis, yet few data exist on whether they are equipped to enable research on cancer inequities, that is, unfair and unnecessary social group differences in health. We conducted a systematic search of global biobanks, identified 46 that have breast tumor tissue and share data externally with academic researchers, and e-mailed and called to obtain data on the sociodemographic, socioeconomic, and geospatial data included, plus time span encompassed. Among the 32 biobank respondents, 91% housed specimens solely from the Global North, only 31% obtained socioeconomic data, 63% included racial/ethnic data (of which 55% lacked socioeconomic data), 44% included limited geographic data, and 55% had specimens dating back at most to 2000. To enable research to address cancer inequities, including trends over time, biobanks will need to address the data gaps documented by our study.In an age of ever-expanding biomarker, genomic, and otheromics data, biobanks are a vital resource for research on tumor properties, clinical treatment, and prognosis (1-4). Indicative of the keen interest in such data, the US National Cancer Institute is funding research to improve biobanks so as "to accelerate and/or enhance research in cancer biology, early detection and screening, clinical diagnosis, treatment, epidemiology, or address issues associated with cancer health disparities" (5).Analysis of cancer health inequities, however, requires more than the biological specimens. Also needed are the social data used to characterize and quantify the inequities (6-8), that is, group differences in health that are unfair, unnecessary, and in principle preventable (8-10). 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 (11-15). 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 sp...

Epigenetic clocks and research implications of the lack of data on whom they have been developed: a review of reported and missing sociodemographic characteristics

“…This is essential to assess the transportability of these clocks to other datasets; it is also important to ensure that health inequalities are not masked or perpetuated in epigenetic research (this may happen when prediction models underperform in social groups that are poorly represented in their training data). The lack of reporting that we find is likely to be due at least in part to the absence of social characteristics in publicly available datasets such as those on GEO; biological data repositories have previously been criticised for a lack of social characteristics of their participants because this prevents the investigation of health inequities that exist between social groups (Krieger and Jahn, 2018). We would like to re-iterate this need for socioeconomic data in the context of epigenetic datasets; as well as the importance of obtaining and reporting these data from cohort studies which have epigenetic data.…”

Epigenetic clocks and research implications of the lack of data on whom they have been developed: a review of reported and missing sociodemographic characteristics

“…This information is essential to assess the transportability of these clocks to other datasets; it is also important to ensure that health inequalities are not masked or perpetuated in epigenetic research (this may happen when prediction models underperform in social groups that are poorly represented in their training data). The lack of reporting that we find is likely to be due to at least in part the absence of social characteristics in publicly available datasets such as those on GEO; biological data repositories have previously been criticized for a lack of social characteristics of their participants because this prevents the investigation of health inequities that exist between social groups [ 77 ]. We would like to reiterate this need for socioeconomic data in the context of epigenetic datasets, as well as the importance of obtaining and reporting these data from cohort studies that have epigenetic data.…”

Novel genetic and epigenetic factors of importance for inter-individual differences in drug disposition, response and toxicity

“…A current status report of the clinical implementation of pharmacogenomic testing in the US has been published recently (Volpi et al, 2018). In addition a large number of national biobanks centered on cancer samples have been established and we refer the interested reader to recent overviews for further information (Krieger & Jahn, 2018; Vaught, Kelly, & Hewitt, 2009).…”