Imagine receiving genetic test results for a disease you could develop later in life without having anyone with whom to discuss your options for managing the risk. That's becoming a common occurrence as people turn to the Internet and other outlets for genetic testing without genetic counseling. In an effort to broaden accessibility to genetic counseling, researchers are exploring non-conventional counseling methods that challenge traditional approaches.
"The delivery of genetic test results for a disease like cancer can trigger a range of emotions and can be more distressful than anticipated-- particularly when there's been no counseling and the results are 'positive'," explains Beth N. Peshkin, MS, CGC, senior genetics counselor at Lombardi Comprehensive Cancer Center, part of Georgetown University Medical Center, and educational director of the Jess and Mildred Fisher Center for Familial Cancer Research. "While in-person genetic counseling is ideal, it's not convenient for people who live in rural areas or don't have access to an academic center."
According to Peshkin, genetic counseling and testing, particularly for adult onset conditions, is a trend that will continue to grow as additional genes are identified and as such testing diffuses into mainstream clinical care. Telephone counseling has been utilized with increased frequency despite a lack of data about its efficacy and concern about its use as a substitute for face-to-face contact with patients.
"In anticipation of this increased demand, it is imperative we find alternatives to traditional genetic susceptibility counseling and that we develop and evaluate these possible options now," Peshkin explains. "A successful alternative would be one that effectively delivers information but allows greater accessibility, such as telephone counseling."
To address these issues, Peshkin and her colleagues have launched a randomized clinical trial --the largest to date-- at Lombardi to evaluate telephone genetic counseling versus in person (standard) genetic counseling among women at high risk of carrying a BRCA1/2 mutation.
"Many of us favor face-to-face counseling but the reality is the telephone may allow us to reach more people, more efficiently" says Peshkin. "It makes sense to develop interventions that parallel the traditional model while extending its reach and deliverability."
Peshkin points to the abundant clinical data on the epidemiology of BRCA1/2 and the efficacy of various management strategies. Also, evidence attests to the efficacy of traditional genetic counseling at increasing knowledge, prospectively improving the accuracy of perceived risk, and increasing the awareness of the risks and benefits of testing.
"Patients appear to be highly satisfied with the traditional format of comprehensive genetic counseling so a study among individuals undergoing BRCA1/2 testing is an ideal population on which to evaluate alternative models of counseling," Peshkin says.
The study is outlined in the Spring edition of the journal Genetic Counseling (online March 17). Enrollment in the study has begun at Lombardi and the trial is expected to complete enrollment by 2010.
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