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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
  • Roswell Park Cancer Institute
  • SUNY Buffalo
  • Niagara Falls Memorial Medical Center

Research output: Contribution to journalArticlepeer-review

37 Scopus citations

Abstract

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
Volume28
Issue number1
DOIs
StatePublished - Mar 2013

Keywords

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

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