Community-based partnership to identify keys to biospecimen research participation

Deborah O. Erwin, Kirsten Moysich, Marc T. Kiviniemi, Frances G. Saad-Harfouche, Warren Davis, Nikia Clark-Hargrave, Gregory L. Ciupak, Christine B. Ambrosone, Charles Walker

Research output: Contribution to journalArticlepeer-review

32 Scopus citations


Reported barriers to participation in biospecimen banking include unwillingness to undergo blood-draw procedures and concerns about confidentiality breaches, privacy, and discrimination. The study identified key factors and influential perspectives to address these barriers and inform methods to improve recruitment and research participation among racially diverse community. A mixed-methods, community-based participatory research orientation was used to collect formative findings to develop a pilot intervention. Methods included nine key informant interviews, three focus groups (n = 26), and 64 community surveys. Findings showed: (1) increased concern of exploitation by pharmaceutical company sponsor; (2) varied perceptions about monetary compensation for research participation; and (3) willingness to participate in a biospecimen banking study by more than 30% of the people in the community survey. Research participation and biospecimen donation may be influenced by who is sponsoring a study. Monetary incentives for study participation may be more important for African American than White participants.

Original languageEnglish
Pages (from-to)43-51
Number of pages9
JournalJournal of Cancer Education
Issue number1
StatePublished - Mar 2013

Bibliographical note

Funding Information:
The authors would like to thank E. Cohen, P. Posey, O. Steed, and A. Primus of the Community Leadership Group in Niagara Falls, NY, and Detric Johnson, Paula Jones, Margaret Zuppa, and Mary Nesline for their assistance in this research and review of this article. This study was funded by Roswell Park Cancer Institute Alliance Foundation and NIH Partners in Research Program grant R03CA139946 from the National Cancer Institute. The Roswell Park Cancer Institute DataBank and Biorepository is a CCSG Shared Resource supported by P30CA016056-27. Marc T. Kiviniemi’s work on this project was supported by NIH grant K07CA106225. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Cancer Institute or the National Institutes of Health. Sections of this manuscript were presented as a poster, at the American Association for Cancer Research (AACR), Disparities Symposium, February 3–6, 2009, in Carefree, AZ, and as a podium presentation at the International Cancer Education Conference, September 8, 2011, in Buffalo, NY.


  • African Americans
  • Biospecimen banking
  • Community-based participatory research

ASJC Scopus subject areas

  • Oncology
  • Public Health, Environmental and Occupational Health


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