Genetic susceptibility testing for common diseases will become widespread soon and form an integral component of evidence-based medicine and health care delivery. With advances in personalized risk assessments come the added challenges of effectively interpreting and communicating the risk implications of test findings to the public and health care professionals. Genetic counselors are at the forefront of addressing these and forthcoming risk communication challenges. Due to their role as educators to the public and increasingly to medical professionals, it is now imperative that genetic counselors be able to address the emerging risk communication challenges in the new genomics era. Initial acquisition of risk communication skills is obtained in the growing number of genetic counseling programs. Unfortunately, there are no published findings exploring how risk communication is envisioned, taught (e.g., best practices) and evaluated among students in accredited genetic counseling programs. Due to the lack of these data, this study aims to: 1) identify through telephone surveys how directors of 26 accredited genetic counseling programs in the United States envision, teach and assess risk communication, 2) assess through telephone surveys how graduating genetic counseling students understand processes of risk communication and identify knowledge gaps, and 3) create a web-based risk communication curriculum that can be integrated into genetic counseling programs.
These aims will be accomplished with the aid of a panel consisting of experts in risk communication, genetic counselors and directors of genetic counseling programs; the panel will identify critical themes that should be taught in risk genetic counseling programs and how to teach them as well as help create the protocol/questions for the telephone surveys with genetic counseling directors and students. Findings and the creation of a risk communication curriculum will provide important advances to better train genetic counselors for the risk communication challenges in the new genomics era.
The main goal of this study is to create a risk communication education curriculum that can be used across genetic counseling programs. The curriculum will be developed through extensive discussions with experts in risk communication and interviews with directors of genetic counseling programs and their students. ? ? ?