Presenting Risk Information

Smerecnik et al. (2009) suggest that genetic counselors provide context to help clients understand risk information, using both verbal and numerical risk estimates to communicate personal risk information, and visual aids to enhance communication of numerical risk information. Information and services should be provided in a fashion that is sensitive to different reproductive choices or cultural differences. For example, in genetic counseling, word choice can convey bias. The word “risk” can have negative connotations. It is preferable to use the word “chance” instead. Smerecnik et al. also suggest that counselors first present accurate, objective numerical risk estimates verbally and with visual aids first, then ask the client what the risk estimate means to him/her, continuing on to a discussion of the meaning and impact to the client of the risk information.

While proportions are commonly used in genetic counseling to express risk, they are more difficult to understand than rates regardless of the clients’ age, language, and education (Grimes & Snively, 1999). Because “innumeracy, the mathematical equivalent of illiteracy” also presents a challenge, alternative ways of conveying risk should be used. Most risk information is provided as numbers alone or as numbers with narrative translations. Lipkus and Hollands (1999) summarized various ways to visually communicate risk, including risk ladders, stick and facial features, graphs, dot formats, pie charts, and histograms. Research on the effectiveness and influence of various formats is lacking, although it is known that risk ladders are effective at conveying magnitude and range of risk, based on the positioning on the ladder; stick figures, faces, asterisks and histograms may induce risk aversion when added to numbers; and people have difficulty understanding low probability events, even with the aid of visuals. Lipkus suggests that research is needed to examine which graphics and visuals are best matched to particular risk communication tasks.

As we noted, the word “risk” implies that the outcome is a disadvantageous or an adverse event. Palmer and Sainfort describe a historical shift in the genetic counseling profession from measuring the magnitude of risk on a objective level (numeric recurrence risk numbers) to a subjective level (interpretation of risk is uniquely defined by the person) (Palmer & Sainfort, 1993). Furthermore, the psychological process of risk perception transforms risk information into an individual’s unique perspectives influenced by the counselee’s life experiences and other sources of information (Uhlmann, Schuette, & Yashar, 2009). Risk is a complex entity that is “lived and experienced” (Sivel et al., 2008). It has been suggested that the best way of risk communication depends on the individual client and the aims of the genetic counseling session (Fransen, Meertens, & Schrander-Stumpel, 2006). The literature is sparse in terms of research with a focus on different cultures or ethnic minorities and risk communication, presentation and perception (Sivell et al., 2008). Bottorff et al. (1998) cite the following factors that may influence the interpretation of risk information: temporal factors, intelligence, gender, cultural or ethnic identity, religiousity, as well as readiness to receive information, mood, personal experiences and understanding of general population risks.

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