N RECENT YEARS, GENETIC TESTING for inherited cancer predisposition has become widely available. [1][2][3] Initially, the use of such testing was limited to those enrolled in research studies at specialized medical centers. However, developments in testing technology and widespread publicity in the news media have led to increased testing for conditions such as breast cancer susceptibility 4,5 in primary care [6][7][8] and other settings, raising questions about how to adequately inform patients about their personal breast cancer risk and the pros and cons of genetic testing. 9-11 Professional organizations advise that people who want to learn about their options and alternatives regarding genetic testing should be referred to specialists such as genetic counselors. 12-14 However, there are only about 400 genetic counselors in the United States who identify themselves as specializing in cancer genetics, 15 and cancer genetic counselors are not available in some regions of the Author Affiliations and Financial Disclosures are listed at the end of this article.

Purpose: Patients seeking genetic testing for inherited breast cancer risk are typically educated by genetic counselors; however, the growing demand for cancer genetic testing will likely exceed the availability of counselors trained in this area. We compared the effectiveness of counseling alone versus counseling preceded by use of a computer-based decision aid among women referred to genetic counseling for a family or personal history of breast

In order to promote ongoing quality improvement of not only the Penn State Cancer Genetics Program, but also other cancer risk assessment programs throughout the country, we developed, piloted and conducted a survey to explore patient expectations, experiences, and satisfaction with the cancer genetic counseling process. The comprehensive survey was mailed to 340 eligible patients, 156 (45.9%) of whom returned the completed survey within the allotted time. Responses to closed-ended questions were tallied and open-ended questions were content analyzed. Major findings show that: (1) Patients were seeking cancer-related information and support throughout the cancer risk assessment process and were interested in participating in available research studies; (2) The setting in which patients are seen for cancer risk assessment may pose potential emotional ramifications; (3) Misperceptions regarding insurance discrimination and lack of insurance coverage persist; (4) Patients view the genetic counselor as responsible for updating them about new discoveries. Specific recommendations for cancer genetics programs are included.