Communication and risk presentation in genetic counseling. Development of a checklist

Genetic counseling involves advising people about genetic disorders, genetic risks and preventive measures, and guiding them in the process of decision-making. It remains unclear what effect certain aspects of risk communication have on outcomes like risk perception and the decisions people take. In order to examine this relationship between process and outcomes, the present study aimed to develop a reliable checklist to assess aspects of risk communication in genetic counseling.

A preliminary checklist was developed on base of literature and tested for manageability in a pilot study. The checklist was adapted and tested for inter-observer reliability in 14 and 56 genetic counseling sessions. Inter-observer reliability was measured by computing Kappa and proportions of agreement.

Most of the items of the last version of the checklist had Kappa values between 0.4 and 1, which means that the inter-observer reliability for most items was sufficient or good. On the majority of items, the observers showed more than 80% agreement.

The checklist we have developed has adequate inter-observer reliability and may be applied in future studies to assess risk communication aspects in genetic counseling.

This checklist could be a useful instrument to identify the relationship between aspects of risk communication in genetic counseling and outcomes. Showing which communication skills and risk presentations affect client's feelings and decisions may help to improve genetic counseling.