This study found that the positive versus
negative dimension of the prototypic melanoma risk feedback consistently influenced melanoma FDRs' melanoma risk perceptions as well as behavioral intentions. Those study participants receiving positive feedback anticipated higher-risk perceptions compared to pretest levels; those participants receiving negative feedback anticipated lower-risk perceptions compared to pretest levels as evaluated in aim I. Similarly, as evaluated in aim II, anticipated intentions for protective behaviors (such as use of sunscreen and shade-seeking) and screening (provided by a health-care provider, as well as self-screening) increased more among those who received positive risk feedback, confirming the theoretical connection between increased risk judgments and intentions to self-protect [28
]. Recent studies have documented that individuals at moderate cancer risk are not highly sensitive to low-penetrance genetic quantitative risk magnitude and pictorial information [29
] and that findings regarding whether a test was “positive” or “negative” may be more salient than the exact percentage risk feedback [11
]. Indeed, genetic risk feedback necessarily contains two dimensions: first, whether a genetic mutation or risk variant is identified or not; second, what quantitative risk level the genetic mutation or variant confers. This may be because the easily understood “gist” is the presence or absence of the risk-conferring gene mutation or variant. It may be that the risk level is only salient to those who have already been identified to have a risk-conferring genetic factor present. For those receiving negative feedback, or feedback that a risk-conferring genetic factor is not present, it may be most important for them to integrate their findings with other relevant personal risk information.
We found that negative feedback led to more varied interpretations than positive feedback, with over half of those receiving negative feedback interpreting their feedback as either decreased melanoma risk, or as risk similar to the general population. It is possible that some of those receiving negative feedback may have discounted their family history—despite the clarity with which this information was presented—either defensively [14
], or because of a recency effect [32
] since hypothetical genetic feedback findings were presented subsequent to the family history risk statement. This is of potential concern given that early adopters of genetic testing outside the high-risk clinic are likely to include those with family disease histories who may be more motivated to use their genetic test findings to minimize their concerns than to amplify them. Some who received positive feedback did not interpret their risk to exceed that of others with a melanoma family history, as this was a more common interpretation among those who received positive (versus negative) gene environment or nongenetic feedback. Suggestions for careful presentation of negative findings include prominent repetition of reminders about other relevant risk factors, including family history, after genetic test findings are conveyed, as well as consideration of whether different types of risk information can and should be integrated in genetic risk calculations. Most importantly, we advocate for the careful evaluation of message interpretation and comprehension prior to the use of these messages in direct-to-consumer contexts.
An analog study presents both opportunities and limitations. The use of scenarios is a widely used research strategy to examine decision-making processes associated with genetic testing [22
]. It is possible that the brevity of prototypic feedback may have impeded interpretations of negative findings, in particular. Another limitation involved the fact that 14% of our FDR participants also had a personal melanoma history, which was an additional source of risk heterogeneity in our sample. However, our results clearly showed that those who received positive feedback both increased their risk perceptions and showed higher intentions for behavior change, supporting relatively accurate interpretations of the positive versus
negative feedback dimension. A strength of our study involved the use of first-degree family members of melanoma patients who are at actual increased melanoma risk based on their family history [33
], as well as the fact that changes in risk judgments led to changes in intended behavior change predicted by major health behavior theories [28
]. Our findings need to be confirmed in actual testing situations, with larger samples that will allow stratification across skin type, sun exposure histories, strength of family history, and whether individuals have a personal melanoma history, with longitudinal followup of actual sun protection and skin cancer screening adoption.
In conclusion, much remains to be learned regarding the translational behavioral potential of human genomics, especially outside of the high-risk setting where extensive genetic counseling will be unavailable or not required. Our study casts a spotlight on the need to conduct further research on those who receive negative genetic feedback, who may be relieved about their findings and yet discount other important cancer risk factors.