Optimal cancer risk assessment program professional roles; analysis of 30 American centers

Abstract

Genetic cancer risk assessment programs, until recently found only at major university and teaching hospitals, have moved into clinical use in community-based centers. While genetic counseling is recommended, little emphasis has been placed on what constitutes comprehensive risk assessment and counseling. As risk assessment has moved into community usage, little attention has been given to tbe types of professional or medical staff required for an effective, quality program. To better understand the scope and practices of existing programs, we surveyed members of the National Society of Genetic Counselor Cancer SIG. Here we report on some of our detailed findings from 30 programs who responded.

Most programs (23/30) relied on the genetic counselor as gatekeeper for entrance into the program, and an additional 4 had no restrictions. The majority of programs (21/30) did not involve a physician anytime during the first visit, yet most (23/30) presented risk figures at this time, thus relying on the expertise of the genetic counselor in education, as well as family history collection, evaluation and interpretation. The counselor spent a minimum of 5 hours per patient in pedigree analysis, counseling, informed consent and test interpretation. Many programs (11/30) relied on the counselor as the main or even sole contact, and often genetic testing decisions were at the discretion of the counselor. The more respected programs utilized the unique training and skills of the genetic counselor for risk assessment and counseling issues, as well as for communicating detailed knowledge of genetic risk and gene testing, while relying on the physician for expertise on medical management issues, tailored to the risk for the individual, considering their mutation status and the particular cancer syndrome.

We conclude, from this and additional data to be presented, that a balanced program requires the expertise and coordination both of a genetic counselor and an oncologist, as well as the availability of other professionals. The implementation of genetic testing without a genetic counselor poses risks for the patients: inadequate collection and genetic interpretation of the family history, only empiric risk analysis, as well as misunderstanding of genetic testing. Cancer risk programs are improved by physician consultation, particularly with description and consequences of possible interventions and promoting and monitoring compliance of individuals with recommendations.