Interpretations of the Term "Actionable" when Discussing Genetic Test Results: What you Mean Is Not What I Heard

Abstract

In genomic medicine, the familiarity and inexactness of the term "actionable" can lead to multiple interpretations and mistaken beliefs about realistic treatment options. As part of a larger study focusing on public attitudes toward policies for the return of secondary genomic results, we looked at how members of the lay public interpret the term "medically actionable" in the context of genetic testing. We also surveyed a convenience sample of oncologists as part of a separate study and asked them to define the term "medically actionable." After being provided with a definition of the term, 21 out of 60 (35%) layperson respondents wrote an additional action not specified in the provided definition (12 mentioned "cure" and 9 mentioned environment or behavioral change) and 17 (28%) indicated "something can be done" with no action specified. In contrast, 52 surveyed oncologists did not mention environment, behavioral change, or cure. Based on our findings, we propose that rather than using the term "actionable" alone, providers should also say "what they mean" to reduce miscommunication and confusion that could negatively impact medical decision-making. Lastly, to guide clinicians during patient- provider discussion about genetic test results, we provide examples of phrasing to facilitate clearer communication and understanding of the term "actionable."

Keywords: Genomic results; Health provider-patient communication; Medically actionable; health literacy.

Figure 1.. Number of journal articles that referred to actionable/actionability as it relates to human genomics/genetics (n=1252)¹²

¹Using the following search terms in PubMed,(through December 31, 2017):(((((actionable[Title/Abstract]) OR actionability[Title/Abstract])) AND ((((((((((((((((results[Title/Abstract]) OR result[Title/Abstract]) OR findings[Title/Abstract]) OR finding[Title/Abstract]) OR variant[Title/Abstract]) OR variants[Title/Abstract]) OR clinically[Title/Abstract]) OR clinical[Title/Abstract]) OR medically[Title/Abstract]) OR medical[Title/Abstract]) OR mutation[Title/Abstract]) OR mutations[Title/Abstract]) OR alteration[Title/Abstract]) OR alterations[Title/Abstract]) OR condition[Title/Abstract]) OR conditions[Title/Abstract])) AND ((((((((((genome) OR genomes) OR genetic) OR genetics) OR genomic) OR genomics) OR genetically) OR genomically) OR gene) OR genes)) Filters: English ²Further exclusions: reference type: book, comment; actionable/actionability not in title/abstract; actionability not used in direct relation to genomic or genetic results, non-human genetics