4 p.m., EST, Tuesday, Jan. 14, 1997
Contact: Sue Lin Chong
(202) 687-5100
[email protected]
EDUCATION AND COUNSELING ON BRCA1 BREAST/OVARIAN CANCER GENE IMPROVES KNOWLEDGE AND AWARENESS OF TESTING RISKS, BUT DOESN'T ALTER INTENT TO BE TESTED, STUDY FINDS Half of participants at moderate risk for cancer expressed desire for testing
WASHINGTON, DC --Researchers at Georgetown University Medical Center have found that education plus counseling was more effective than stand-alone education in increasing understanding about the potential benefits, limitations, and risks of BRCA1 gene testing. However, neither intervention changed the intent to be tested within the study of approximately 400 women interviewed, according to the research report in the Jan. 15 Journal of the National Cancer Institute.
The study, conducted by Caryn Lerman, PhD, associate professor and acting director of cancer genetics at Georgetown University's Lombardi Cancer Center, and colleagues, states that while many women with a family history of breast or ovarian cancers have expressed a desire to undergo genetic testing when such tests are available, many overestimate their personal breast cancer risk. Previous studies have shown that women misunderstand the possible benefits, (e.g., knowledge, reduced concern about own and children's cancer risks), the possible limitations (e.g., uncertain accuracy of results and meaning of positive or negative results), and possible risks (e.g., potential employment or insurance discrimination, adverse psychosocial effects) of genetic testing. Several biotechnology companies have already begun to market genetic health tests to the public and health care providers. (more)
Lerman's randomized study examined the effects of stand-alone education (education only approach) or an education plus counseling intervention (counseling approach) with a waiting list (control) approach in 400 cancer-free women aged 18 to 75 in Washington, DC. All of the women were categorized as moderate or low risk for having a BRCA1 gene mutation, i.e, most had only one first-degree relative with breast/ovarian cancer.
As the researchers had hypothesized, both the education-only approach and the counseling approach yielded statistically-significant increases in knowledge about genetic testing, compared with the control group. Moreover, the counseling approach, but not the education only approach, was superior to the control arm in significantly increasing perceived limitations and risk of testing and decreasing benefits of testing.
However, an unexpected finding of the study was that neither approach produced changes in the desire to have BRCA1 testing: both before and after intervention, approximately half of the women in each group stated that they intended to be tested and 52 percent provided a blood sample.
Lerman and her colleagues believe that the results of the study must be viewed relative to the anticipated goals and effectiveness of genetic counseling. If the primary goal is to increase knowledge and comprehension about genetic testing, they suggest, then the education-only approach could be deemed as effective as education plus counseling. Given the desire to make BRCA1 testing widely available and the lack of both skills and time many health care providers have for personalized patient education, the authors observe that education only might be sufficient when genetic testing must be streamlined. However, the researchers state that if the goal is to facilitate optimal decision-making through evaluation of the positive and negative consequences of alternate choices, then the study suggests a counseling approach is needed. (more)
"The merits of specific components of genetics education and counseling may best be judged by the long-term psychological consequences of participants' actual testing decisions and their satisfaction," says Lerman. "The counseling approach may be most critical in preparing patients to cope with their test results, because this approach allows us to explore the patient's expectations."
Lerman and her fellow researchers urge continued investigation of alternate counseling approaches and their merits for individuals with different ethnic and socioeconomic backgrounds, because no single counseling approach is likely to be effective for all participants in all settings.
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Founded in 1970, Lombardi Cancer Center is a major component of Georgetown University Medical Center, which includes Georgetown University Hospital, the Schools of Nursing and Medicine, physician health care practices, and several suburban satellites. It is one of 26 comprehensive cancer centers designated by the National Cancer Institute. The Lombardi Center seeks to improve the diagnosis, treatment, and prevention of cancer through innovative basic and clinical research, patient care, community education, and outreach, and the training of cancer specialists for the future.
To speak to Dr. Lerman about this study, please contact Sue Lin Chong in Georgetown University Medical Center's press office at (202) 687-5100 or 687-5713.
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