Open AccessEstablishment of the Alabama Hereditary Cancer Cohort ‐ strategies for the inclusion of underrepresented populations in cancer genetics research
Author(s) -
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.
Publication year - 2018
Publication title -
molecular genetics and genomic medicine
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 0.765
H-Index - 29
ISSN - 2324-9269
DOI - 10.1002/mgg3.443
Subject(s) - proband , cancer , gerontology , medicine , health equity , residence , cancer genetics , family medicine , cohort , underrepresented minority , demography , genetics , public health , pathology , biology , medical education , mutation , sociology , gene
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.