Literature DB >> 32975747

Amplifying Their Voices: Advice, Guidance, and Perceived Value of Cancer Biobanking Research Among an Older, Diverse Cohort.

Altovise T Ewing1, Arlener D Turner2, Kwame S Sakyi3, Ahmed Elmi4, Michele Towson5, Jimmie L Slade6, Adrian S Dobs7, Jean G Ford8, Lori H Erby9.   

Abstract

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.
© 2020. American Association for Cancer Education.

Entities:  

Keywords:  Biobanking; Cancer research; Community-based participatory research (CBPR); Diverse population

Mesh:

Year:  2020        PMID: 32975747     DOI: 10.1007/s13187-020-01869-0

Source DB:  PubMed          Journal:  J Cancer Educ        ISSN: 0885-8195            Impact factor:   1.771


  6 in total

1.  Racial and Ethnic Disparities in Cancer Survival: The Contribution of Tumor, Sociodemographic, Institutional, and Neighborhood Characteristics.

Authors:  Libby Ellis; Alison J Canchola; David Spiegel; Uri Ladabaum; Robert Haile; Scarlett Lin Gomez
Journal:  J Clin Oncol       Date:  2017-10-16       Impact factor: 44.544

2.  Understanding participation by African Americans in cancer genetics research.

Authors:  Jasmine A McDonald; Frances K Barg; Benita Weathers; Carmen E Guerra; Andrea B Troxel; Susan Domchek; Deborah Bowen; Judy A Shea; Chanita Hughes Halbert
Journal:  J Natl Med Assoc       Date:  2012 Jul-Aug       Impact factor: 1.798

3.  The rapid estimate of adult literacy in genetics (REAL-G): a means to assess literacy deficits in the context of genetics.

Authors:  Lori H Erby; Debra Roter; Susan Larson; Juhee Cho
Journal:  Am J Med Genet A       Date:  2008-01-15       Impact factor: 2.802

4.  Increasing participation in genomic research and biobanking through community-based capacity building.

Authors:  Elizabeth Gross Cohn; Maryam Husamudeen; Elaine L Larson; Janet K Williams
Journal:  J Genet Couns       Date:  2014-09-18       Impact factor: 2.537

5.  The Geisinger MyCode community health initiative: an electronic health record-linked biobank for precision medicine research.

Authors:  David J Carey; Samantha N Fetterolf; F Daniel Davis; William A Faucett; H Lester Kirchner; Uyenlinh Mirshahi; Michael F Murray; Diane T Smelser; Glenn S Gerhard; David H Ledbetter
Journal:  Genet Med       Date:  2016-02-11       Impact factor: 8.822

6.  Early cancer diagnoses through BRCA1/2 screening of unselected adult biobank participants.

Authors:  Adam H Buchanan; Kandamurugu Manickam; Michelle N Meyer; Jennifer K Wagner; Miranda L G Hallquist; Janet L Williams; Alanna Kulchak Rahm; Marc S Williams; Zong-Ming E Chen; Chaitali K Shah; Tullika K Garg; Amanda L Lazzeri; Marci L B Schwartz; D'Andra M Lindbuchler; Audrey L Fan; Rosemary Leeming; Pedro O Servano; Ashlee L Smith; Victor G Vogel; Noura S Abul-Husn; Frederick E Dewey; Matthew S Lebo; Heather M Mason-Suares; Marylyn D Ritchie; F Daniel Davis; David J Carey; David T Feinberg; W Andrew Faucett; David H Ledbetter; Michael F Murray
Journal:  Genet Med       Date:  2017-10-26       Impact factor: 8.822

  6 in total

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