To our knowledge, this is the first study to investigate the impact of exposure to risk information on women’s beliefs about and intentions to purchase DTC BRCA testing. This study demonstrates that women’s beliefs about DTC genetic testing, intentions to get BRCA testing and preference for where they get tested are altered by exposure to information on the possible risks of online BRCA testing.
Consistent with our hypothesis, we found that women who are exposed to information on some of the possible risks of DTC BRCA testing have more negative beliefs about DTC BRCA testing and have lower intentions to get BRCA testing than women in the control condition. These findings, while in line with our expectations, raise a number of important issues worth considering. First, if calls for increased risk information on DTC websites aim to optimize informed medical decision making our findings suggest that the inclusion of a limited amount of risk information in a commercial website will influence women’s beliefs and possibly their behavior. Our purpose in including information about the possible risks of DTC BRCA testing was to expose women to more “balanced” information than that which is often seen on commercial websites. Fair and balanced information provision is a key concept in the regulation of DTC advertising (18
). Many of the commercial websites promote products but have little to no information on the risks of testing or on the risks of testing through the internet (9
). The fact that the women in our experiment who were exposed to risk information had more negative beliefs about DTC testing and were more likely to prefer clinic based testing may mean that they had a greater appreciation for some of the possible risks of internet based testing and were perhaps more informed. However, the true impact of risk information exposure on informed consent is difficult to determine in a study of this nature and further research in this area is needed.
Second, the inclusion of information on the possible risks of internet BRCA testing on commercial websites may actually lower women’s intention to get any type of BRCA testing. One possible explanation for this finding is that the item assessing overall intentions for testing was interpreted as assessing intentions for DTC BRCA testing given the setting in which the questionnaire was completed. In order to investigate this issue further, we examined the association between exposure to risk information on testing preference site and on beliefs about DTC BRCA testing for women who did not intend to get BRCA testing (analysis not shown). We found that women in the risk conditions who did not intend to get testing reported a higher preference for clinic based BRCA testing (75% vs. 63%, p=0.08) and had more negative beliefs about DTC BRCA testing (85% vs. 68%, p=0.006) than women in the control condition. While we speculate that these findings suggest that the women in our experiment may in fact be reporting lower intentions to get DTC BRCA testing rather than any type of BRCA testing, we cannot reach firm conclusions based our data. The alternative and potentially more concerning explanation (when considering women with an elevated risk for HBOC) is that the inclusion of risk information on commercial websites actually decreases overall intentions to get BRCA testing. Prior work has shown that educational interventions can decrease interest in genetic testing (47
). In addition, there is ample literature suggesting that genetic testing is underutilized despite the fact that mutation carriers and other high-risk women have good options for cancer risk reduction (35
). Possible reasons for low rates of utilization include lack of access to testing facilities, lack of awareness of genetic testing, psychological and family factors, perceptions of cancer survivability, cost, concerns over discrimination and lack of physician recommendation (52
). If in trying to optimize informed consent in the area of DTC BRCA testing we inadvertently discourage at risk women from obtaining a BRCA test we may be doing more harm than good. These findings stress the need to conduct careful studies investigating the potential impact of regulation on behavior in order to reduce the potential for adverse consequences.
The third important finding of our study is that by including risk information on commercial websites we may shift demand for BRCA testing from the internet to the clinic. The current standard of care for BRCA testing is testing within the context of a multi-disciplinary cancer risk evaluation program. While this method of care delivery may be optimal, experts are concerned that there may not be enough genetic practitioners to meet the increasing demand for genetics services (66
). Multidisciplinary risk evaluation clinics are not available in all states and physicians often lack the training or knowledge to provide genetic counseling (67
). As genetic testing becomes more commonplace, health educators and providers must prioritize continuing genetic medical education in order to keep up with consumer demand.
Our second hypothesis, that risk information presented by experts would be more persuasive than unattributed risk information, was not well supported by our data. While the data suggest that there may be some differences for risk frames, particularly that the ES frame may be more influential in shaping preferences for testing site than the URI frame, our small sample size and the resulting wide and overlapping confidence intervals make distinctions between risk frames impossible. In addition, while we tried to match the content of the ES and the URI conditions as closely as possible, the language for the privacy and comprehension categories was not completely equivalent and could have confounded the small differences seen. Our inability to find differences between the two risk conditions leads us to believe either that the expert source condition was not more persuasive than the unattributed risk condition or that we have failed to detect a difference between our groups when one really exists. At this time, the estimated population level uptake of DTC BRCA testing is relatively unknown and we have assumed that moderate to large effect sizes would be of clinical importance. If, however, DTC BRCA testing becomes widely used, future work evaluating manipulations that detect small effects will be important. Future research on source credibility framing, as well as other types of framing, should be conducted in order to determine the most effective way to present risk information to consumers in the context of DTC genetic testing.
Our study has several limitations. The first limitation is that our relatively small sample size provided little power to detect differences in outcomes by risk frame. The second limitation is that our groups showed two imbalances at baseline: Hispanic ethnicity and interest in BRCA testing. However, we when we added these covariates into our models, the effect of exposure on outcomes was preserved. The third limitation is that our sample was predominately white, relatively well educated and all participants had access to the internet. While internet users are the likely target audience for DTC genetic testing, we acknowledge that the findings from this sample might not generalize to other ethnic or socioeconomic groups. Additionally, commercial websites often change over time and current websites for DTC BRCA testing may provide different information to consumers than they provided when our “mock” website was developed. Furthermore, we studied only a limited number of potential risks of online BRCA testing in women who had a family or personal history of breast or ovarian cancer. The findings of this study may not generalize to other types of risk information, other types of DTC genetic testing or to average-risk populations.
With the rise in DTC access to cancer-related technologies policymakers will need to determine if consumers should have access to online genetic testing and if the information and claims on company websites should be regulated. This study demonstrates that exposure to information on the potential risks of online BRCA testing alters women’s beliefs about, preferences for and intentions related to BRCA testing. Because there might be positive and negative consequences of regulating commercial DTC information, we must ensure that we understand the potential impact of the proposed regulation on patients’ beliefs and intentions so that we can create policy that truly optimizes cancer prevention strategies.