Alabama’s HudsonAlpha Institute expanding access to cancer-risk screenings across the state
While on a visit to Huntsville in the fall of 2014, Mary-Claire King, the acclaimed geneticist who discovered the BRCA1 gene associated with inherited breast cancer risk, challenged the HudsonAlpha Institute for Biotechnology to make testing more widely available. King discovered the first of many genes now known to be important for cancer risk. Advancing sequencing technologies have made it easier and less expensive to identify individuals at increased risk for cancer.
The HudsonAlpha Institute for Biotechnology, located in Huntsville, answered King’s challenge and, within a year, launched a community-wide screening program called Information is Power. The test uses a DNA sample collected from a cheek swab and identifies DNA changes in 28 genes that can increase the risk for breast, ovarian, colon, prostate and pancreatic cancers.
Since its inception, more than 6,200 Alabamians have participated, and more than 200 individuals have been identified with increased risk. These individuals are directed to appropriate screening and preventative measures that could save their lives.
Today, HudsonAlpha continues to answer that challenge by supporting testing across Alabama. Thanks to philanthropic organizations, the test is offered for free and reduced cost throughout the state. The Information Is Power screening test is offered at a reduced rate of $129 for those 19 and older in Madison, Limestone, Jackson, Marshall or Morgan counties and is free to those 28-30 years old in those same five counties.
Over the last several years, the Information is Power team has dedicated significant efforts to expanding its reach beyond north Alabama with a particular emphasis on underserved and underrepresented communities that may experience limited access to testing. Residents of the Black Belt and members of the African American community are less likely to have access to testing and the relevant genetic counseling services. These challenges further exacerbate existing health disparities among medically underserved populations, such as African Americans and individuals living in rural areas.
To help address these barriers, HudsonAlpha’s Information is Power team has forged relationships with organizations throughout the state to help offer free screening, with support from philanthropic partners.
Patients seen at one of nine locations of Selma-based Rural Health Medical Program Inc. (Dallas County, Demopolis, Marion, Monroeville, Pine Apple, Thomaston, Thomasville, Uniontown and Yellow Bluff) are eligible for free testing. A similar opportunity is available in Montgomery to patients of Dr. John Jernigan, a healthcare partner. The initiative has also brought cancer awareness events and free testing to hundreds of college students at Alabama’s historically Black colleges and universities including Alabama State University in Montgomery, Miles College in Birmingham and Alabama A&M University in Huntsville.
The initiative continues to grow and offer new opportunities for education and testing across the state. The program receives support from philanthropic organizations around the state, including the Alabama Power Foundation, the Breast Cancer Research Foundation of Alabama, the Community Foundation of Greater Huntsville and the Russel Hill Cancer Foundation.
“The Alabama Power Foundation understands the importance of this initiative and how it helps individuals and their families be proactive about their healthcare,” said Staci Brown Brooks, foundation president. “We are proud to support HudsonAlpha and their efforts to bring cancer awareness to communities across the state.”
For those who don’t qualify for free or reduced-price, the Information Is Power screening test is available for $225. For details about ordering the test and criteria for reduced-cost or free testing, click here or call 256-327-9597.
For those considering participating in the initiative, here are answers to some frequently asked questions:
Why is genetic screening for cancer risk important? Genetic screening for cancer risk can empower you to make important health decisions for you and your family. Many people do not have access to family health information or have a limited knowledge of cancer history in their family and can benefit from information about what their genes hold for their cancer risk.
In collaboration with your physician and a genetic counselor, you can use the information provided to plan your medical care. Remember, you share genetics with your family. What you learn could potentially affect your parents, siblings, children, cousins and others you love.
Who is a candidate? Any consenting adult (a person 19 or older) can learn about hereditary cancer risk through one of the Information is Power initiatives using the test. Individuals with a strong family history of cancer might qualify for more comprehensive testing through insurance, so talk with your physician to determine which test might be best for you.
What will the genetic screening tell me? Our test will tell you if you have a genetic change in one of 28 genes that can increase your risk for cancer. The report you receive will provide guidance on what you might want to do to reduce your risk if you have increased risk. Research shows 95% of people find they do not have a change that increases their risk. That means you should stick to normal screening guidelines for cancer, such as mammograms and colonoscopies as recommended by your physician.
What will the genetic screening not tell me? This genetic screening does not diagnose cancer, nor does it replace other types of screening, such as mammograms. It also does not tell whether an individual definitely will or will not develop cancer in the future, as the presence of a risk factor does not increase cancer risk to 100%. Likewise, the absence of risk factors identified through this screening does not reduce cancer risk.
What happens if I receive a positive result? A positive result from this genetic screening indicates that a change is present in a gene that increases your risk for certain types of cancer. It does not mean that you have cancer. The specific cancer types and risk levels depend on which gene has a change present. If you have a positive test result, you will receive a phone call from a HudsonAlpha genetic counselor to further explain your result and your recommended next steps, which include seeking an appointment with a clinical genetic counselor who specializes in cancer genetics.
A negative result from this genetic screening indicates no risk-increasing changes were identified in the genes tested. This does not guarantee that you will never develop cancer. It is important to consider that even in the absence of obvious genetic risk factors, each person in the general population is at a baseline risk of developing cancer.
What if I still have questions? Call 256-327-9597 or send an email to informationispower@hudsonalpha.org.
Information for this article was provided by the HudsonAlpha Institute for Biotechnology.