The State of Alabama has implemented a visionary and innovative investment in the future of its residents’ health status by awarding $2 million per year for a five-year program – the Alabama Genomic Health Initiative (AGHI). This futuristic program is aimed at unlocking the human genome as a part of the future of health care by identifying the presence of specific genes to allow for preventing and treating disease, including certain types of cancer, heart problems, and genetic disorders. This is one of the first statewide initiatives of this kind in the United States.
This initiative involves collaboration between the UAB School of Medicine and the Hudson Alpha Institute for Biotechnology in Huntsville to conduct the genomic testing of approximately 2,000 Alabamians each year. Participation is free and is being sought to closely reflect the age, gender, race, ethnic and socioeconomic composition of Alabama’s population. Participation is strongly desired from all 67 Alabama counties. Participants must be 18 years of age or more and will receive extensive education about the program before they decide whether to provide the consent required for testing. Assurance that test findings will not be released without the participant’s approval is of utmost concern. Testing involves the collection of a blood sample.
A list of 59 genes that are identified by the American College of Medical Genetics and Genomics (ACMG) is being used in this initiative. These 59 genes are known to be associated with an increased risk for cancers, cardiovascular diseases, and genetic disorders. The presence of these specific genes is also being identified because there are actions that you and your physician can take to help prevent or detect early onset of their associated diseases. Other genes could be included in this study at a later date.
The AGHI will also include a research component, using data from testing to better understand the role that genes play in health and disease. It is estimated that 1-3 percent of those tested will test positive for one or more of the 59 gene types. A small percent of testing participants who are identified as having a medical condition that is believed to have a genetic cause that has not yet been identified will be invited to participate in more extensive whole genome sequencing. Participants have the following three test reporting options: (1) Your results are shared with you and your provider. (2) Your results are only provided to you. (3) Your results are not provided to anyone, including yourself.
Given the poor health status of Alabama’s population, identifying possible risks for major health conditions in time to prevent these conditions from emerging or to decrease to potential impact through early intervention holds much promise. Alabama residents currently have the second highest cardiovascular diseases death rate among all 50 states with the death rate being over 17 percent higher in Alabama’s rural counties. Alabama residents currently have the seventh highest cancer death rate among all 50 states with the death rate being over nine percent higher in Alabama’s rural counties. Genomic testing holds exciting potential to identify individuals with increased risk where prevention can have a very positive health status impact. Alabama is emerging as a leader in this promising futuristic method of prevention.
(Dale E. Quinney is a member of the AGHI Participant Advisory Committee – article published in the February 2018 issue of Alabama Living magazine, Alabama Rural Electric Association)
Increased testing participation is needed from African Alabamians and males. Greater participation is needed from residents of rural counties. For additional information on the AGHI, visit the program’s website. To enroll in the Alabama Genomic Health Initiative, call 855-462-6850.