Introduction: Rural residents in the U.S., specifically residents of Appalachia, continue to be underrepresented in cancer-related research, which limits the generalizability of findings. In this study, we examined factors associated with willingness of Appalachian adults to participate in donation and banking of biospecimens for research.
Methods: As a component of the Appalachian Community Cancer Network (ACCN) II Research Study, between January 2012 and September 2013, we conducted a survey among a faith-based sample of 493 Appalachian adults age 18-92 years (mean = 55.8 years). Five questions aimed at assessing participants' willingness (five-point scale: not willing at all, hesitant but willing, neutral, willing, very willing) to donate blood, saliva, and buccal specimens and to have their specimens banked and used in future genetics studies were included in the survey. Using univariate logistic regression models, where the outcomes were dichotomized (“willing” [very willing or willing] vs. “not willing” [neutral, hesitant but willing, or not willing at all]), we calculated odds ratios (ORs) and 95% confidence intervals (CIs) to describe factors significantly associated with participants' willingness to provide these samples. Future analyses will include multivariable-adjusted models.
Results: Approximately 73% (358/493) indicated willingness to donate ≥1 biospecimen type; among them, 75% (268/358) were willing to donate all 3 types. Years of education (16 yrs vs. ≤12 yrs: OR 1.85, 95% CI 1.15-2.99), being employed (OR 1.63, 95% CI 1.07-2.49), having private insurance (OR 1.75, 95% CI 1.18-2.63), identifying as Appalachian (OR 1.61, 95% CI 1.00-2.58), being religious (OR 1.66, 95% CI 1.03-2.66) and being normotensive (OR 1.64, 95% CI 1.12-2.38) were associated with willingness to donate blood. Years of education (16 yrs vs. ≤12 yrs: OR 2.47, 95% CI 1.48-4.11), being employed (OR 1.64, 95% CI 1.06-2.52) and having private insurance (OR 1.52, 95% CI 1.01-2.27) were associated with willingness to donate a buccal sample. Years of education (16 yrs vs. ≤12 yrs: OR 1.94, 95% CI 1.22-3.10) and being employed (OR 1.52, 95% CI 1.01-2.31) were associated with willingness to donate saliva. Approximately 61% (300/493) of participants indicated willingness to have their biospecimens banked for use in future studies; among them, 97% (290/300) were willing to have their samples used for future genetics studies. Years of education (16 yrs vs. ≤12 yrs: OR 2.04, 95% CI 1.27-3.28), regularly engaging in physical activity (OR 1.60, 95% CI 1.10-2.33) and experiencing fewer depressive symptoms (OR 1.85, 95% CI 1.10-3.13) were associated with willingness to have donated biospecimens stored for future research. Years of education (16 yrs vs. ≤12 yrs: OR 2.29, 95% CI 1.40-3.74) and being employed (OR 1.66, 95% CI 1.08-2.54) were associated with willingness to allow donated biospecimens to be used in genetics studies.
Conclusions: Appalachian adults in this study responded favorably to questions regarding willingness to participate in biospecimen donation and banking for future research, including genetics studies. Respondents with higher socioeconomic status and positive self-reported health status were most likely to endorse biospecimen donation. This study offers insights into the predictors of willingness to participate in donation and banking of biospecimens for research and may contribute to future efforts to increase equitable representation of Appalachian residents in biomedical research.
Citation Format: Adana A.M. Llanos, Gregory S. Young, Eugene J. Lengerich, Ryan Baltic, Betsy B. Aumiller, Mark B. Dignan, Electra D. Paskett. Willingness of adults in Appalachia to participate in research involving biospecimens, biobanking and genetics. [abstract]. In: Proceedings of the Eighth AACR Conference on The Science of Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; Nov 13-16, 2015; Atlanta, GA. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2016;25(3 Suppl):Abstract nr A41.