NEW YORK (GenomeWeb News) – The University of South Florida will use a $2.8 million grant from the National Institutes of Health to partner with Aetna and patient advocates to study how genetic testing for breast cancer risk can impact clinical decisions made by patients and doctors.
USF said today that the five-year American BRCA Outcomes Among Recently Diagnosed (ABOARD) study could fill a gap in knowledge about how breast cancer risk tests are being used and could guide policies and services to help patients and doctors make better health decisions.
While genetic counselors can help patients and families assess risks, choose between the types of tests they want to have and interpret the results, and make decisions about cancer screening, early detection, and prevention, USF said, only a small percentage of breast cancer patients with inherited cancer risk currently receive such counseling and testing, USF said.
Although breast cancer is a disease that is strongly influenced by genetic predisposition, according to Rebecca Sutphen, a professor of genetics at the USF Department of Pediatrics' Epidemiology Center, many women at high risk are not aware of their genetic susceptibility to the disease, or to its recurrence, or related risk to ovarian cancer.
"This unique academic-industry collaboration will create a new level of research into the impact of genetic information on American cancer patients and their families. Few topics have greater potential for positive public health impact," Sutphen said.
Sutphen will head ABOARD's research team at the USF Health Morsani College of Medicine. Aetna's group will be led by Joanne Armstrong, who is the company's national medical director for women's health and lead for genomic medicine.
Joining USF and Aetna in the effort is a team led by Sue Friedman of the patient advocacy and awareness organization called Facing Our Risk of Cancer Empowerment (FORCE), and Marc Schwartz, director of cancer control at Georgetown University's Lombardi Comprehensive Cancer Center.
The partners will pull together patient-reported outcomes and medical claims data and information from a range of clinical settings to provide a "real-world" picture of the current state of care for these patients. USF and Aetna also have created a research and security infrastructure to protect the privacy and confidentiality of the patients who participate in the study.
"The research will provide critical information that can help ensure the benefits of advanced genetic testing, and genomics can be used to guide safe, effective personalized health care," Armstrong said in a statement. "As more sophisticated tests are developed, we have a responsibility to help patients and doctors understand how to act on the information to improve patients' health."
USF also said the partners on this project have already been working together for two years, using support from the Aetna Foundation to study the experiences of individuals who have had genetic tests for cancer risk. The research also looked into disparities in treatment and health outcomes among minority patients. The results from that research are expected to be published later this year.