Communicating genetic risk information for common disorders in the era of genomic medicine

Abstract

Communicating genetic risk information in ways that maximize understanding and promote health is increasingly important given the rapidly expanding availability and capabilities of genomic technologies. A well-developed literature on risk communication in general provides guidance for best practices, including presentation of information in multiple formats, attention to framing effects, use of graphics, sensitivity to the way numbers are presented, parsimony of information, attentiveness to emotions, and interactivity as part of the communication process. Challenges to communicating genetic risk information include deciding how best to tailor it, streamlining the process, deciding what information to disclose, accepting that communications may have limited influence, and understanding the impact of context. Meeting these challenges has great potential for empowering individuals to adopt healthier lifestyles and improve public health, but will require multidisciplinary approaches and collaboration.

Figure 1

Sample pictographs from 23andMe results. © 23andMe, Inc. 2013

Figure 2

Sample risk summary from the Coriell Institute for Medical Research.

Figure 3

Sample risk result pictograph set from the fourth Risk Evaluation and Education for Alzheimer’s Disease (REVEAL) Study trial. Abbreviations: AD, Alzheimer’s disease; MCI, mild cognitive impairment.

Figure 4

Sample results from the Personalized Risk Estimator for Rheumatoid Arthritis (PRE-RA) Family Study risk calculator.