FOUNDATIONAL RESEARCH
Total AGHI recruitment by the numbers
The Alabama Genomic Health Initiative (AGHI) is a partnership between HudsonAlpha and UAB-Medicine to provide genomic testing, interpretation, and counseling free of charge to residents in each of Alabama’s 67 counties. The AGHI also includes a major focus on research, through which data from test results will be used to advance scien- tific understanding of the role that genes play in health and disease. Visit www.uabmedicine.org/aghi to learn more.
Enrollment by race:
White....................................................................... 71.2% Black or African American...................................... 20.7% Hispanic/Latino....................................................... 3.72% More Than One Race. ................................................ 3.4% Asian. ........................................................................ 2.3% Unknown................................................................... 2.1% Native American Indian or Alaska Native.................. 0.3% Native Hawaiian or Other Pacific Islander. ............... 0.4% 72% are FEMALE and 28% MALE
To date, 5,369 individuals, representing all 67 Alabama counties, have been enrolled in the population screening group of AGHI. 81 positive genotyping results among
In order to recruit a participant cohort reflective of Alabama's rich diversity, the recruitment team de- veloped community engagement strategies that took into consideration the fundamental challenges to recruitment of African American participants. By host- ing health fairs and recruitment events at churches and community organizations throughout the state, the AGHI team recruited diverse populations from every county in Alabama. While African American participation has not reached the representation of this community as a percentage of Alabama's overall population, AGHI has achieved an overall representation exceeding 20 percent for African Americans to date. The AGHI team hopes that their published engage- ment techniques and recruitment strategies, which resulted in significant improvement in representation of African American participants in Alabama, can be adopted in other states. By continuing to gain the trust of minority populations in genomic research, the research- ers hope that genomics research will one day include di- verse, multi-ethnic populations to accurately represent genetics-related disease risks in all populations. n 80 individuals (1.5 percent) were identified in the population cohort. These results include risk-increasing variants for hereditary cancer, cardiomyopathy, malignant hyperthermia and hypercholesterolemia.
research could discriminate individuals in employment and insurability. In his opinion piece, May concludes that addressing the underlying distrust in genomics research and privacy policies is an important step in increasing the diversity in genomics research participation. May and his colleagues set out to achieve greater diversity in genomic research participation and address the fundamental challenges to recruiting minority pop- ulations through the Alabama Genomic Health Initiative (AGHI) 2 . With an African American population constitut- ing about 26 to 27 percent of the state’s overall popula- tion, Alabama is well positioned to help meet this goal.
2019-20 Research Report 11
Made with FlippingBook - Online magazine maker