Clinical geneticists' and genetic counselors' views on the communication of genetic risks: a qualitative study

Abstract

Objective: In genetic counseling, counselees' understanding of risk information is considered crucial for informed decision-making. The counselors' task is to convey risks in a format that is understandable. It is therefore important to know how and why counselors say they communicate risks in different formats, and to identify any perceived training needs. By investigating counselors' perspectives, training can be more tailored to their needs.

Methods: Interviews were held with 18 counselors in 4 of the 8 clinical genetic centres in The Netherlands.

Results: Counselors reported using different formats, but seemed to prefer a numerical format (e.g. percentages). Methods varied between counselors and depended on their training, their own abilities, experiences they have had with counselees, but rarely because of information they have gathered from the literature on risk communication. Counselors reported assessing comprehension most often from counselees' non-verbal responses, and reported tailoring their approaches to their clients' needs. Although some counselors are eager to know if their way of risk communication is 'right', overall the counselors did not report a need to be trained in risk communication.

Conclusion: Counselors appear to have clear ideas about how to present risks, although evidence for their methods is often lacking.

Practice implications: Training in general communication skills and evidence-based risk communication could be of benefit to counselors and, consequently, to their counselees.