TY - JOUR
T1 - Amplifying Their Voices
T2 - Advice, Guidance, and Perceived Value of Cancer Biobanking Research Among an Older, Diverse Cohort
AU - Ewing, Altovise T.
AU - Turner, Arlener D.
AU - Sakyi, Kwame S.
AU - Elmi, Ahmed
AU - Towson, Michele
AU - Slade, Jimmie L.
AU - Dobs, Adrian S.
AU - Ford, Jean G.
AU - Erby, Lori H.
N1 - Funding Information:
Funding for this study was provided by the Community Network Program Center (CNPC) in the National Cancer Institute (NCI) of the National Institutes of Health (NIH). The Center to Reduce Cancer Health Disparities (CRCHD) of the Johns Hopkins University also received funding for cancer screening and early detection with a supplement for collecting biospecimens from the African Americans in Baltimore City and Prince George’s County through the 5U54CA153710-04 and sub-project id: 7747 and the Cancer Epidemiology, Prevention, and Control training grant (T32) at the Johns Hopkins Bloomberg School of Public Health, training grant number (T32 CA0093140). Acknowledgments Author Contributions
Funding Information:
The authors would like to acknowledge the community advisory group (CAG) members of the Johns Hopkins University Center to Reduce Cancer Disparities (JHCRCD) in Baltimore City and Prince George’s County in Maryland and the participants in the eight FGDs. Special thanks to Gabriela Siegel, MD, who served as a research assistant and took field notes. Our gratitude to the chairpersons of the two CAGs for their guidance and dedication to this project. JF and LE led the conception and design of the project. AE, ATE, KS, and LE contributed to the acquisition of data. ATE, ADT, KS, and LE were instrumental in the analysis of the data. ATE led the drafting of the work. ADT and KS offered significant input on all components of the manuscript. AE, JS, and MT offered comments and input on the study design. All authors read and approved the final manuscript.
Publisher Copyright:
© 2020, American Association for Cancer Education.
PY - 2022/6
Y1 - 2022/6
N2 - The use of biobanks may accelerate scientists’ chances of developing cures and treatments that are tailored to individuals’ biological makeup—a function of the precision medicine movement. However, given the underrepresentation of certain populations in biobanks, the benefits of these resources may not be equitable for all groups, including older, multi-ethnic populations. The objective of this study was to better understand older, multi-ethnic populations’ (1) perceptions of the value of cancer biobanking research, (2) study design preferences, and (3) guidance on ways to promote and increase participation. This study was designed using a community-based participatory research (CBPR) approach and involved eight FGDs with 67 older (65–74 years old) black and white residents from Baltimore City and Prince George’s County, MD. FGDs lasted between 90 and 120 min, and participants received a $25 Target gift card for their participation. Analysis involved an inductive approach in which we went through a series of open and axial coding techniques to generate themes and subthemes. Multiple themes emerged from the FGDs for the development of future cancer-related biobanking research including (1) expectations/anticipated benefits, (2) biobanking design preferences, and (3) ways to optimize participation. Overall, most participants were willing to provide biospecimens and favored cancer-related biobank. To increase participation of older, diverse participants in biobanking protocols, researchers need to engage older, diverse persons as consultants in order to better understand the value of biobanking research to individuals from the various populations. Scientists should also incorporate suggestions from the community on garnering trust and increasing comfort with study design.
AB - The use of biobanks may accelerate scientists’ chances of developing cures and treatments that are tailored to individuals’ biological makeup—a function of the precision medicine movement. However, given the underrepresentation of certain populations in biobanks, the benefits of these resources may not be equitable for all groups, including older, multi-ethnic populations. The objective of this study was to better understand older, multi-ethnic populations’ (1) perceptions of the value of cancer biobanking research, (2) study design preferences, and (3) guidance on ways to promote and increase participation. This study was designed using a community-based participatory research (CBPR) approach and involved eight FGDs with 67 older (65–74 years old) black and white residents from Baltimore City and Prince George’s County, MD. FGDs lasted between 90 and 120 min, and participants received a $25 Target gift card for their participation. Analysis involved an inductive approach in which we went through a series of open and axial coding techniques to generate themes and subthemes. Multiple themes emerged from the FGDs for the development of future cancer-related biobanking research including (1) expectations/anticipated benefits, (2) biobanking design preferences, and (3) ways to optimize participation. Overall, most participants were willing to provide biospecimens and favored cancer-related biobank. To increase participation of older, diverse participants in biobanking protocols, researchers need to engage older, diverse persons as consultants in order to better understand the value of biobanking research to individuals from the various populations. Scientists should also incorporate suggestions from the community on garnering trust and increasing comfort with study design.
KW - Biobanking
KW - Cancer research
KW - Community-based participatory research (CBPR)
KW - Diverse population
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U2 - 10.1007/s13187-020-01869-0
DO - 10.1007/s13187-020-01869-0
M3 - Article
C2 - 32975747
AN - SCOPUS:85091609349
SN - 0885-8195
VL - 37
SP - 683
EP - 693
JO - Journal of Cancer Education
JF - Journal of Cancer Education
IS - 3
ER -