Editor’s Note: A version of this article first appeared in the Spring/Summer 2016 issue of Forward magazine, which is published twice a year by Fox Chase Cancer Center.
Risk Assessment Program Turns 30: Fox Chase Program Helps People Understand Genetic Risks for Cancer
By Emily Shafer
In 1991, Fox Chase Cancer Center’s Risk Assessment Program (RAP), then called the Margaret Dyson Family Risk Assessment Program, sought to educate women considered high-risk because of their family history about cancer screening and prevention for breast and/or ovarian cancer.
The program also included sisters and daughters of women with these types of cancer. In 2016, there were almost 15,000 participants in the program, which has expanded to serve those at high risk for a variety of other cancers, including gastrointestinal, prostate, kidney, and lung cancers.
Mary Daly, chair of Clinical Genetics at Fox Chase, founded RAP and still serves as its director. The program started before the field of genetics was widely researched. However, the discovery of the BRCA1 and BRCA2 mutations, now well known as a major factor in hereditary breast and ovarian cancers, was a game changer.
The mission of the program is simple: Help those at high risk for cancer learn about risk factors and preventive measures by way of education, individualized counseling, genetic testing, and screening. Often, patients visit the program because they have a family history of cancer or have been diagnosed with cancer at a young age.
The services that RAP provides vary by cancer. First, counselors provide patients with a concrete idea of their risk, then advise the patients on screening recommendations and possible medical or prophylactic surgical measures.
Daly recalls that at the program’s inception, she never could have imagined how much of what clinicians and researchers now know about cancer is based on a genetic understanding of the disease. “What surprises me the most is how quickly we went from discovering BRCA1 and BRCA2 in 1994, and now in 2016, we are able to test for more than 55 genes associated with cancer.”
Daly has received a number of honors for her work, most recently including the National Comprehensive Cancer Network’s (NCCN) Rodger Winn Award, which is given annually to one NCCN Clinical Practice Guidelines in Oncology (NCCN Guidelines) panel member who exemplifies commitment, drive, and leadership in developing evidence-based guidelines, according to the NCCN.
She was recognized with the award for her leadership in developing the Genetic and Familial High-Risk Guidelines for hereditary cancers, a resource that is widely used by the genetics and oncology community. She is also the founding chair of the NCCN Guidelines Panel for Genetics and Familial High Risk Assessment: Breast, Ovarian, and Pancreatic, as well as a former member of the Breast Cancer Risk Reduction Panel and the Breast Cancer Screening and Diagnosis Panel.