Abstract
Although research involving biospecimens is essential in advancing cancer research, minorities, especially African-Americans, are underrepresented in such research. We conducted a mixed-method (qualitative focus groups among African-Americans and quantitative cross-sectional surveys) study on factors associated with biospecimen knowledge and donation intent in the medically underserved urban communities in Southeast and Southwest Washington, DC. Focus groups were conducted among 41 African-Americans and survey data was available from 302 community residents of different races/ethnicities using convenience sampling. We used logistic regression to model the association between biospecimen knowledge and donation intent with selected sociodemographic variables using survey data. Only 47 % of the participants had knowledge of the different types of biospecimens. In multivariate logistic regression models, male gender, African-American race, and low education levels were significantly associated with lower knowledge about biospecimens. Compared to Whites (79 %), fewer African-Americans (39 %) and Hispanics (57 %) had knowledge of biospecimens but the difference was significant for African-Americans only. Positive intent to donate biospecimens for research was observed among 36 % of the survey respondents. After multivariate adjustment, only biospecimen knowledge was associated with donation intent (odds ratio = 1.91, 95 % confidence interval 1.12, 3.27). Contrary to popular opinion, “mistrust of the medical community” was not the most commonly reported barrier for biospecimen donation among African-Americans. “Not knowing how biospecimens will be used” and “lack of knowledge of biospecimens” were the most common barriers. Our study highlights the importance of education on biospecimens among community residents to increase minority participation in biospecimen research.
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Acknowledgments
We acknowledge Robert Aiken for his assistance in survey data collection.
This work was supported by the National Cancer Institute at the National Institutes of Health [grant number U01 CA114593 (J.M.), grant number 2K05CA096940 (J.M.) and 3P30CA051008-18S2 (L. L. A.)].
Compliance with ethics guidelines
All procedures followed were in accordance with the ethical standards of the responsible committee on human experimentation (institutional and national) and with the Helsinki Declaration of 1975, as revised in 2000 (5). Informed consent was obtained from all patients for being included in the study. No identifying information is included in this article.
Conflict of interest
Chiranjeev Dash, Sherrie F. Wallington, Sherieda Muthra, Everett Dodson, Jeanne Mandelblatt, and Lucile L. Adams-Campbell declare that they have no conflict of interest.
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Dash, C., Wallington, S.F., Muthra, S. et al. Disparities in knowledge and willingness to donate research biospecimens: a mixed-methods study in an underserved urban community. J Community Genet 5, 329–336 (2014). https://doi.org/10.1007/s12687-014-0187-z
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DOI: https://doi.org/10.1007/s12687-014-0187-z