Abstract
Latinos are one of the fastest-growing population groups in the USA, and are underrepresented in scientific research and even more so in genetic research. The disproportionately lower number of certain subpopulations participating in biomedical research has a significant impact on the representativeness of scientific outcomes. We established a collaboration with scientists at a designated National Cancer Institute comprehensive cancer center to test the feasibility of community-based approaches for engaging Latinos in biospecimen donation for cancer genomic research. A methods triangulation approach was applied to gain a deeper understanding from the community, that included key informant interviews with Latino community leaders (N = 6), four focus groups (N = 22) with members of the Latino community, and the use of an audience response system within the focus groups to capture quantitative data. Overall, the majority of participants had never participated in biospecimen donation; however, despite being unaware of the biobank, they expressed willingness to participate as a way to help advance research. Themes included: Confusion on what biospecimen donation process entails; Barriers to and incentives for participation; Strategies and locations for reaching the Latino community. Clear communication of the “public good” as it relates to biospecimen donation by healthy/non-patient participants is a less clearly conceptualized message; yet, the significance of delivering this message is important to gaining participation and increasing the diversity of samples available for cancer genomic studies from a broader community context.
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Acknowledgments
The authors would like to thank Jomary Colon and the Latino community partners of Buffalo, NY for their assistance in this research. This study was supported in part by the Western New York Cancer Coalition (WNYC2) Center to Reduce Disparities grant: NIH/NCI/CRCHD U54CA153598-01. The Roswell Park Cancer Institute DataBank and Biorepository is a CCSG Shared Resource supported by P30CA016056-27. 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 the manuscript were presented as podium presentations at the following meetings: Cancer, Culture, & Literacy Conference, May 18, 2012, in Clearwater Beach, FL; and at the American Association for Cancer Research Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved, October 27, 2012, in San Diego, CA.
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The authors declare that they have no conflict of interest.
Ethical standards
The research reported in this manuscript was approved by the Roswell Park Cancer Institute Institutional Review Board and is in compliance with the ethical standards and current laws in the USA where all of the research was conducted.
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Rodriguez, E.M., Torres, E.T. & Erwin, D.O. Awareness and interest in biospecimen donation for cancer research: views from gatekeepers and prospective participants in the Latino community. J Community Genet 4, 461–468 (2013). https://doi.org/10.1007/s12687-013-0152-2
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DOI: https://doi.org/10.1007/s12687-013-0152-2