Abstract
Biospecimen banking programs are critically dependent on participation of diverse population members. The purpose of this study was to test a pilot intervention to enhance recruitment to a biospecimen bank among racially diverse community members. A mixed methods, community-based participatory research (CBPR) orientation was used to develop and pilot an intervention to educate and recruit participants to a biospecimen bank. Pre- and post-assessments of knowledge about research, perceived costs and benefits of participation (expected utility), and emotional states associated with research participation (affective associations) as well as post-intervention participation in biobanking were examined to determine intervention effectiveness. The pilot intervention educated 148 community members; 107 (73 %) donated blood and 77 (52 %) completed a 36-page lifestyle questionnaire. Thirty-two percent of participants were African American and 11 % were Native American. Participating in the educational program significantly reduced negative affect associated with research involving collection of genetic material or completion of a survey. Improved knowledge and understanding of biobanking and research through a CBPR approach are likely to increase participation rates in biobanking for diverse community members. Accurate information and improved knowledge can reduce individual anxiety and concerns that serve as barriers to research participation.
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Acknowledgments
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, 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.
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The authors declare that they have no conflict of interest.
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Kiviniemi, M.T., Saad-Harfouche, F.G., Ciupak, G.L. et al. Pilot Intervention Outcomes of an Educational Program for Biospecimen Research Participation. J Canc Educ 28, 52–59 (2013). https://doi.org/10.1007/s13187-012-0434-0
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DOI: https://doi.org/10.1007/s13187-012-0434-0