Racial/ethnic differences in comprehension of biospecimen sharing/banking: University of Rochester Cancer Center NCI Community Oncology Research Program (URCC-NCORP) nationwide study in 710 cancer and healthy subjects.

Abstract

e18077 Background: Informed consent documents containing language about biospecimen storage/sharing (BSS) may be a barrier to minority participation in cancer research. We explored this issue in a nationwide URCC-NCORP observational study by assessing whether breast cancer patients and healthy control subjects, who provided consent to a cognitive function study, differed in their understanding of the ways their BSS could be used by researchers. Methods: We analyzed cross-sectional data from female breast cancer patients scheduled to receive chemotherapy at NCORPs and healthy controls. After reading a consent form related to BSS and consenting to participate in a study about cognitive function, participants’ understanding of BSS was evaluated using four items for biospecimen sharing (score 0-4); three items for relevance to care (score 0-3); nine items for biospecimen use (score 0-9); and six for research purpose (score 0-6); a higher score indicates better understanding. Linear models were used to compare the mean scores between white and non-white subjects, adjusting for education and baseline reading comprehension (WRAT). Results: 461Breast cancer patients and 249 healthy controls completed the survey. The adjusted linear models showed that white subjects scored higher than non-whites (mean scores 14.43 vs. 13.43) on the survey questions overall (p < 0.05), after accounting for education and WRAT. White subjects were more likely than non-whites to correctly answer all the questions for the biospecimen use (42.1% vs. 34.4%, p < 0.22), biospecimen sharing (31.3% vs. 28.1%, p < 0.74), relevance to care (35.1% vs. 17.2%, p < 0.01), and research purpose (4.1% vs. 1.4%, p < 0.97). Conclusions: Our research suggests that informed consent comprehension related to BSS is low overall across all racial/ethnic backgrounds, but non-white subjects’ scores remained lower than whites even after adjusting for education and WRAT. Efforts should be made by researchers to make it easier for all study subjects, especially non-white subjects, to understand informed consent form and BSS.