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Racial/Ethnic Differences in Comprehension of Biospecimen Collection: a Nationwide University of Rochester Cancer Center NCI Community Oncology Research Program Study

  • Matthew AsareEmail author
  • Charles E. Heckler
  • Eva Culakova
  • Charles S. Kamen
  • Amber S. Kleckner
  • Lori M. Minasian
  • David S. Wendler
  • Michelle Feige
  • Carol J. Weil
  • Joan Long
  • Sharon K. Cole
  • Adedayo A. Onitilo
  • Luke J. Peppone
  • Gary R. Morrow
  • Michelle C. Janelsins
Article
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Abstract

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.

Keywords

Race Disparities Biospecimens Consent Consent form 

Notes

Acknowledgements

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

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.

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Copyright information

© American Association for Cancer Education 2019

Authors and Affiliations

  • Matthew Asare
    • 1
    Email author
  • Charles E. Heckler
    • 2
  • Eva Culakova
    • 2
  • Charles S. Kamen
    • 2
  • Amber S. Kleckner
    • 2
  • Lori M. Minasian
    • 3
  • David S. Wendler
    • 4
  • Michelle Feige
    • 5
  • Carol J. Weil
    • 3
  • Joan Long
    • 6
  • Sharon K. Cole
    • 7
  • Adedayo A. Onitilo
    • 8
  • Luke J. Peppone
    • 2
  • Gary R. Morrow
    • 2
  • Michelle C. Janelsins
    • 2
  1. 1.Department of Public Health, Robbins College of Health and Human SciencesBaylor UniversityWacoUSA
  2. 2.James P. Wilmot Cancer InstituteUniversity of Rochester Medical CenterRochesterUSA
  3. 3.National Cancer Institute (NCI)BethesdaUSA
  4. 4.National Institute of Health (NIH)BethesdaUSA
  5. 5.Association for the Accreditation of Human Research Protection Programs, Inc. (AAHRPP)WashingtonUSA
  6. 6.Cancer Research Consortium of West Michigan NCORPGrand RapidsUSA
  7. 7.Dayton Clinical Oncology ProgramDaytonUSA
  8. 8.Wisconsin NCORPMarshfieldUSA

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