Racial/Ethnic Differences in Comprehension of Biospecimen Collection: a Nationwide University of Rochester Cancer Center NCI Community Oncology Research Program Study
- 40 Downloads
To examine whether (a) non-minority participants differed from racial minority participants in the understanding of biospecimens collected for research purposes, (b) patients differed from comparison group in their understanding of the ways their biospecimens could be used by researchers, and (c) participants received adequate information before consenting to donate blood for research studies. We analyzed cross-sectional data from female breast cancer patients scheduled to receive chemotherapy at the National Cancer Institute (NCI) Community Oncology Research Program (NCORP) clinical sites and a healthy comparison group. After reading a consent form related to biospecimens and consenting to participate in a clinical trial, participants’ understanding of biospecimen collection was evaluated. Linear models were used to compare scores between non-minority and racial minority participants as well as cancer and non-cancer comparisons adjusting for possible confounding factors. A total of 650 participants provided evaluable data; 592 were non-minority (Caucasian) and 58 participants were a racial minority (71% Black and 29% other). There were 427 cancer patients and 223 comparisons. Non-minority participants scored higher than racial minorities on relevance-to-care items (diff. = 0.48, CI 0.13–0.80, p = 0.001). Comparison group scored higher than cancer patients on relevance-to-care items (diff. = 0.58, CI 0.37–0.78). A moderate number of the participants exhibited a poor understanding of biospecimen collection across all racial/ethnic backgrounds, but racial minority participants’ scores remained lower in the relevance-to-care subscale even after adjusting for education and reading level. Differences were also noted among the patients and comparison group. Researchers should facilitate comprehension of biospecimen collection for all study participants, especially racial minority participants.
KeywordsRace Disparities Biospecimens Consent Consent form
We thank the participants in this study and all staff at the URCC NCORP Research Base and our NCORP affiliate sites who recruited and followed the participants. We thank the NCI CCOP and NCORP Programs for their funding and support of this project. The following CCOP/NCORPs participated in this study: Central Illinois, Columbus, CRCWM, Dayton, Delaware, Grand Rapids, Greenville, HOACNY, Kalamazoo, Kansas City, Marshfield, Metro Minnesota, Nevada, North Shore, PCRC SCCC, SCOR, Upstate Carolina, Virginia Mason, Wichita, WiNCORP, and WORC. We also thank Dr. Susan Rosenthal for her critical review of this manuscript.
Funding was provided by NCI U10CA037420 Supplement, NCI UG1CA189961, NCI K07CA1688, and NCI R25CA102618.
Compliance with Ethical Standards
Conflicts of Interest
The authors declare that they have no conflict of interest.
- 2.He N et al. (2017) Attitudes and perceptions of cancer patients toward biospecimen donation for cancer research: a cross-sectional survey among Chinese cancer patients. Biopreserv BiobankGoogle Scholar
- 9.James RD, Yu JH, Henrikson NB, Bowen DJ, Fullerton SM (2008) Strategies and stakeholders: minority recruitment in cancer genetics research. J Community Genet 11(4):241–249Google Scholar
- 15.Lawson FP et al. (2015) Abstract A28: Enrolling African Americans into a cancer-related biobank. Cancer epidemiology biomarkers & Prevention. 24(10 Supplement): p. A28-A28Google Scholar
- 16.Warner TD et al. (2018) Broad consent for research on biospecimens: the views of actual donors at four U.S. medical centers. J Empir Res Hum Res Ethics 13(2):115–124Google Scholar
- 24.Janelsins MC, Heckler CE, Peppone LJ, Kamen C, Mustian KM, Mohile SG, Magnuson A, Kleckner IR, Guido JJ, Young KL, Conlin AK, Weiselberg LR, Mitchell JW, Ambrosone CA, Ahles TA, Morrow GR (2017) Cognitive complaints in survivors of breast cancer after chemotherapy compared with age-matched controls: an analysis from a nationwide, multicenter, prospective longitudinal study. J Clin Oncol Off J Am Soc Clin Oncol 35(5):506–514Google Scholar
- 25.Grady C, Eckstein L, Berkman B, Brock D, Cook-Deegan R, Fullerton SM, Greely H, Hansson MG, Hull S, Kim S, Lo B, Pentz R, Rodriguez L, Weil C, Wilfond BS, Wendler D (2015) Broad consent for research with biological samples: workshop conclusions. Am J Bioeth 15(9):34–42PubMedPubMedCentralGoogle Scholar
- 26.Wagner L et al (2009) Measuring patient self-reported cognitive function: development of the functional assessment of cancer therapy-cognitive function instrument. J Support Oncol 7:32–39Google Scholar
- 29.Killien M, Bigby JA, Champion V, Fernandez-Repollet E, Jackson RD, Kagawa-Singer M, Kidd K, Naughton MJ, Prout M (2000) Involving minority and underrepresented women in clinical trials: the National Centers of Excellence in Women’s Health. J Womens Health Gend Based Med 9(10):1061–1070PubMedGoogle Scholar
- 31.Leah C, Trahan PW (2009) Eliminating racial and ethnic health disparities; a business case update for employers issue brief, p. 18Google Scholar
- 32.Aguila E et al (2016) Culturally competent informed-consent process to evaluate a social policy for older persons with low literacy: the Mexican case. SAGE Open 6(3):2158244016665886Google Scholar
- 33.Kripalani S et al (2008) Clinical research in low-literacy populations: using teach-back to assess comprehension of informed consent and privacy information. IRB Ethics Hum Res 30(2):13–19Google Scholar
- 34.Fink AS, Prochazka AV, Henderson WG, Bartenfeld D, Nyirenda C, Webb A, Berger DH, Itani K, Whitehill T, Edwards J, Wilson M, Karsonovich C, Parmelee P (2010) Enhancement of surgical informed consent by addition of repeat back: a multicenter, randomized controlled clinical trial. Ann Surg 252(1):27–36PubMedGoogle Scholar
- 40.Botkin JR (2001) Informed consent for the collection of biological samples in household surveys. In: National Research Council (US) Committee on Population; Finch CE, Vaupel JW, Kinsella K, editors. Cells and Surveys: Should Biological Measures Be Included in Social Science Research? Washington (DC): National Academies Press (US). 12. Available from: https://www.ncbi.nlm.nih.gov/books/NBK110047/
- 44.Olson EM, Lin NU, Krop IE, Winer EP (2011) The ethical use of mandatory research biopsies. Nature reviews. Clin Oncol 8(10):620–625Google Scholar