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| navigate: home: magazine: fall 2000: article | |
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Breast cancer cd-rom educates patients about genetic testing By Susan J. Burlingame | |||||||
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If you had a genetic susceptibility to breast cancer or any other potentially serious medical condition, would you want to know? Would you have genetic testing done to determine if you are predisposed? What sort of reaction might you have to that knowledge? Would it make you depressed? Spur you into action? And what would your employer say, or your insurance company, if they knew of your susceptibility to this cancer? How would your family and friends react? These questions led Penn State’s Dr. Michael Green at The Milton S. Hershey Medical Center to look for a way to better inform women and men about the medical, ethical, policy and social issues associated with genetic testing for breast cancer susceptibility. Genetic testing provides information that can have serious consequences, and as a medical ethicist, Green was interested in making sure people understand these issues before being tested. His interest in informed consent led him to come up with the concept of an interactive CD-ROM to use with patients considering genetic testing. “Genetic testing has become much more common due to the explosion of genetic information and recent stories in the media,” said Green, a physician and assistant professor with appointments in the departments of Humanities and Internal Medicine in the College of Medicine. “More and more patients are requesting these tests from their primary care doctors, but people often assume a larger benefit and smaller risk than is warranted. Some request genetic testing without much knowledge and possibly without a genetic counselor.” Green mentioned that though President Bill Clinton signed a bill to keep insurance companies from discriminating against persons who have had genetic testing, people should be concerned about stigmatization and discrimination that can go along with being tested. “In an ideal world,” he said, “everyone would talk to a genetic counselor prior to genetic testing.” But as demand for testing increases, there may be too few counselors to go around. The CD-ROM can help by providing some basic information about the genetics of breast cancer. Much of this would be covered by a genetic counselor during an initial visit. With the help of a small National Institutes of Health grant, Green and Dr. Norman Fost at the University of Wisconsin, developed the CD-ROM, called Breast Cancer Risk and Genetic Testing. Now, a three-year $620,000 grant from the National Cancer Institute has enabled Green to study the effectiveness of the CD-ROM. It currently is being used in clinical studies at Penn State, the M.D. Anderson Cancer Center in Houston and the University of Pittsburgh. Breast Cancer Risk and Genetic Testing uses questions and answers, graphics and easy-to-understand statistics to walk the user through the many aspects of breast cancer itself. It also covers the role of heredity and other risk factors for getting breast cancer, what information is ascertained from genetic testing and the positive and negative ramifications of genetic testing. The CD-ROM is easy to navigate through and gives mini tests of knowledge gained in order to move on to other sections. Patients can backtrack or repeat information as needed, going at their own pace, exploring the sections they personally wish to understand better. The first goal of the funded study is to improve knowledge about breast cancer and the ramifications of genetic testing. The second goal is to see if the CD-ROM can enhance genetic counseling by helping counselors spend less time providing basic education and more time actually counseling. The study will include about 75 people at each of the three sites, involving participants who have been referred to genetic counselors or who have requested genetic testing. According to Green, half of each group will see genetic counselors only. The other half will be given the CD-ROM and will see a genetic counselor after they have spent time viewing it. Since a computer program cannot answer a patient’s specific questions, it is important that a patient still have time with a genetic counselor following the use of the CD-ROM. Then, researchers will conduct an assessment of knowledge and satisfaction with each group to see how the CD-ROM with counseling compares with counseling only. Can the CD-ROM do better than or be equal to a genetic counselor in terms of improving knowledge? “Our hypothesis is that the CD-ROM will be at least as effective at improving knowledge as speaking with genetic counselors,” Green pointed out. “The preliminary data supports that hypothesis.” A pilot study, which has already been completed, suggests that both the CD-ROM and counselors are effective for increasing knowledge and that people like the CD-ROM better for making efficient use of their time. For other things, people prefer talking to a counselor. One of Green’s partners, Dr. Maria Mascari, is a Hershey Medical Center genetic counselor and medical geneticist. She too is hoping to find out whether the CD-ROM is an effective way to educate about breast cancer genetics. “It is possible,” she said, “that women who view the CD-ROM before meeting with me or another counselor might already have questions formulated.” That way Mascari, who normally spends one-and-one-half to two hours during a patient’s initial visit, can spend less time providing basic education. “I want to see if the CD-ROM changes the counseling session, such that time spent face to face becomes more effective, and whether patients understand the potential risks and how the information might be beneficial to them,” Mascari said. Then counselors can focus on counseling, such as asking questions about patients’ support systems, helping them understand their motivations for considering genetic testing and anticipating reactions to various test results and the decisions they might make based on that information. While genetic testing can tell if a person has an abnormality in one of the breast cancer susceptibility genes, it cannot determine whether or not a person will actually get breast cancer. However, Mascari points out, with this knowledge, “there are a growing number of things a person can do to manage and potentially reduce one’s risk for cancer, such as get earlier screenings, make lifestyle changes and consider prophylactic chemopreventive agents, such as Tamoxifen and the option of surgery.” Mascari and Green also would like to see the CD-ROM used by primary care and other physicians when the subject of genetic testing comes up in their offices. “I see the CD-ROM as an excellent tool that physicians could give to patients,” Mascari said. The real challenge, she added, is “how do you communicate to physicians the importance of providing patients with enough information prior to ordering a genetic test?" People who are better informed about genetic testing can make better decisions about whether or not they can benefit from genetic testing. Green’s CD-ROM provides an important new tool for this essential education process. | ||||||
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© 2002 Outreach Communications, Outreach & Cooperative Extension, The Pennsylvania State University phone: (814) 865-8108, fax: (814) 863-2765, e-mail: outreachnews@outreach.psu.edu |
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