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.
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Notes
Love Canal was an unfinished canal and land region in the Niagara Falls NY area that was used to dump an estimated 22,000 tons of mixed chemical and hazardous wastes from 1942 to 1953, then covered with dirt and declared safe. This land was sold in 1955 to construct an elementary school and housing development. Unusually heavy rain and snowfall in 1975 and 1976 caused the previously buried biohazardous chemicals and waste to permeate the soil and drinking water in the area, and in 1978 it was declared a threat by the New York Department of Health Commissioner. Families were evacuated, lawsuits were subsequently filed, and subsequent chromosome damage in residents was discovered.
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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 (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.
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Erwin, D.O., Moysich, K., Kiviniemi, M.T. et al. Community-Based Partnership to Identify Keys to Biospecimen Research Participation. J Canc Educ 28, 43–51 (2013). https://doi.org/10.1007/s13187-012-0421-5
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DOI: https://doi.org/10.1007/s13187-012-0421-5