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Professor and students study complexities of decision-making in genetic testing for breast cancer risk
By Vicki Prichard, director of communication, College of Arts and Science
Because of early detection and improved treatments, survival rates for breast cancer are growing. With the availability of genetic testing, many women are contemplating the decision to calculate their risk of developing the disease, says Chris Wolfe, a professor and cognitive psychologist in Miami’s psychology department.
Wolfe knows the decision to have genetic testing confronts a complicated set of issues. Working with a $364,120 grant from the National Cancer Institute, and in collaboration with Valerie Reyna at Cornell University and Xiangen Hu at the University of Memphis, Wolfe and his team of Miami undergraduates and graduate students are creating an intelligent tutoring system to help women understand and weigh the benefits and difficulties that comes with such knowledge.
“I’m a cognitive psychologist so I’m interested in the learning process and the decision-making process,” says Wolfe. “How can we apply what we know from psychology to this realm, to this kind of important question that a lot of women are facing.”
Genetic testing, which many insurance companies do not cover, can determine a woman’s projected risk of breast cancer, which can alter a woman’s future.
“You can go to the doctor and get a blood test but you don’t necessarily know what to do with the information because it’s not like a Huntington’s disease, where if you have the mutation you will have the disease,” says Wolfe. “Different women will make different choices.
In addition, issues loom about taking the test itself – issues regarding privacy, finances and impact on other family members.
“A woman might say she would like to know what her genetic risk is but her sister might not want to know that,” says Wolfe. “Then you have this financial issue in that it’s often not covered by insurance. The results are in your medical records, and while we have laws in the U.S. to protect people, your employer can’t fire you but they can legally deny you long term care insurance.”
Enter the Intelligent Tutoring System (ITS) created with AutoTutor Lite, an animated, talking avatar that interacts with women online about genetic testing for breast cancer. The system with an animated conversational agent draws upon well-vetted, approved, and available information on the National Cancer Institute website. The tutoring system poses questions to participants and engages them in conversation. The animated conversational agent responds differently to different users depending on what they say. The research goals are two-fold: First, to better understand how women decide whether to undergo predictive testing for genetic risk of breast cancer, and second, is the development of the sophisticated animated ITS. Ultimately, the goal is to help women make better decisions about genetic testing for breast cancer risk.
Wolfe and Reyna are the principal investigators. Wolfe’s research team comprises four Miami graduate students – Colin Widmer, Elizabeth Cedillos, Chris Fisher, and Audrey Well -- and six undergraduates – Isabella Damas Vannucchi, Triana Williams, Shelby Copenhaver, Mandy Withrow, Nicole Rodgers, and Andrew Cirelli.
“In my laboratory I have undergraduate students who are working as research assistants, certainly an important piece of student involvement,” says Wolfe. “I have a graphic design student, Jenny Miller, who took two of my psychology classes for the thematic sequence and I recruited her to do the graphics and I think she did a wonderful job.”
Graduate student Colin Widmer spent the summer analyzing the verbal interactions that women had with the tutor. He says that early results indicate the women who have used the tutoring program score higher on inquiries related to genetic breast cancer testing than women who do not use the program.
“What I find particularly exciting about this project is that women who go through the tutor are not just passively getting the knowledge the tutor is teaching, but are actively engaged throughout it in these interactions,” says Widmer. “They can answer questions the tutor asks just by entering text and the tutor can actually respond appropriately to their answers, giving suggestions and encouragement.”
“Our preliminary results from the research are very encouraging that these interactions with the tutor are effective in teaching women about the complex, and difficult to understand, domain of genetic testing or breast cancer risk,” says Widmer.
More than 100 Miami undergraduate women have participated in the research.
“I’m very grateful to the Miami students who were our participants and our research subjects,” says Wolfe. “They might be just doing it for a requirement in class but it really makes an impact and helps us do this kind of research here at Miami that we couldn’t do otherwise.”
Soon the tests will move beyond the laboratory setting and move into a broader and more diverse sample of women who will use the tutor online from their homes.