Establishment of the Alabama Hereditary Cancer Cohort ‐ strategies for the inclusion of underrepresented populations in cancer genetics research. Issue 5 (1st July 2018)

• Record Type: Journal Article
• Authors: Bishop, Madison R.; Shah, Amit; Shively, Melissa; Huskey, Anna L. W.; Omeler, Sophonie M.; Bilgili, Erin P.; Jackson, Ebony; Daniell, Kathleen; Stallworth, Elizabeth; Spina, Stephanie; Shepp, Kasey; Bergstresser, Sydney; Davis, Amber; Dean, Holly; Gibson, Jantunn; Johnson, Brandon; Merner, Nancy D.
• Is Part Of: Molecular genetics & genomic medicine. Volume 6:Issue 5(2018)
• Page Start: 766
• Page End: 778
• Publication Date: 2018-07-01
• Subjects: African American -- biobank -- hereditary breast cancer -- recruitment -- underrepresented individuals; Medical genetics -- Periodicals; Genomics -- Periodicals; 616.042
• DOI: 10.1002/mgg3.443
• Languages: English
• ISSNs: 2324-9269

Abstract

Abstract: Background: Historically, groups that are most susceptible to health and healthcare disparities have been underrepresented in medical research. It is imperative to explore approaches that can facilitate the recruitment of underrepresented individuals into research studies. Methods: Two approaches, hospital and community‐based recruitment (CBR), were developed and implemented over 36 months to study the genetics of hereditary breast cancer and associated cancers in Alabama, a medically underserved state with double the national percentage of self‐identifying African Americans, establishing the Alabama Hereditary Cancer Cohort. Results: Overall, 242 individuals enrolled. This included 84 cancer probands through hospital recruitment, as well as 76 probands and 82 family members through CBR. Eighty‐one percent of the study participants' counties of residence are completely medically underserved. Furthermore, African Americans represent 26% of the hospital probands compared to 49% and 70% of the probands and family members who, respectively, enrolled through CBR. Conclusion: Although both recruitment mechanisms were instrumental, the unique trust building, educational, and traveling components of CBR facilitated the enrollment of African Americans resulting in large families for genetic analyses. The ultimate goal is to gain insight from these rudimentary efforts in order to expand recruitment and accrue a unique resource for cancer genetics research. Abstract : It is imperative to explore approaches that can facilitate the recruitment of underrepresented individuals into research studies. Two hundred and forty two individuals from apparent hereditary breast cancer families and across medically underserved Alabama enrolled into a genetic study through two different mechanisms, hospital‐based and community‐based recruitment, the latter facilitating the enrollment of large African American families. The ultimate goal is to gain insight from these rudimentary efforts in order to expand recruitment efforts and accrue a unique resource for cancer genetics research.