Toward an in‐depth profiling of DTC users

To the Editor: Agurs-Collins et al. (1) recently analyzed data from the 2013 US Health Information National Trend Survey (HINTS) concerning the levels of public awareness of Direct-to-Consumer genetic testing (DTC-GT), the factors associated with public awareness of DTC-GT, and the main sources of information about testing. They reported that more than one third of citizens were aware of DTC-GT, the majority being those who actively seek information on cancer, use Internet and have high numeracy skills. Results highlighting an increased knowledge for DTC-GT services are an example of how individuals demand to have an active role in managing their health. However, awareness of health management possibilities does not automatically translate into awareness of health responsibility, and consequent decisions or life style changes. In a recent meta-analysis, Marteau et al. (2) assessed the effect of receiving DNA-based risk information for diseases whose risk could be reduced by behavioral change. The authors reported that communicating DNA-based risk does not produce any remarkable change in life style, despite recognizing the poor quality of included studies in literature. The knowledge of being genetically predisposed to a disease might give individuals a reason to avoid or to cope with manageable factors in order to counterbalance their risk. Nevertheless, focusing on the cognitive factors described by Agurs-Collins et al. (1) such as numeracy, seeking behaviors and Internet use, may only provide an index of the access to new advanced options in medicine or may be predictive of uptake genomic tests, but does not measure risk perception, risk attribution, and consequent behaviors. The authors claimed that such awareness of DTC-GT may translate into healthy changes in behavior and disease prevention, and they promote a further investigation on those issues. But evidences in the literature have extensively demonstrated that being ‘information seekers’ do not influence behavior change per se (3). Current literature shows that individual differences in perceived seriousness and controllability of the disease affect reactions to DTC-GT (4). However, personal characteristics, such as internal vs external attribution of risk, and a family history of disease, are the factors which seem to have a key role in determining lifestyle changes (3, 5). Therefore, we suggest that future studies on DTC-GT should investigate the consumers’ psychological profile and the connection between behavioral changes, health locus of control and identification through familial experience. In fact, the role of these aspects in coping with genetic predisposition toward diseases and in attitudes of individuals to modify behaviors is far from being understood. Furthermore, it should be noted that access to DTC-GT services does not always match health literacy, therefore consumers might not have sufficient knowledge to understand genetic risk data and translate them into ‘positive’ behaviors (5, 6). Individuals fit information into their own context and their beliefs before translating them into health-related behaviors. Perceptions of risk and consequent beliefs change over time (7), thus making it difficult to predict the long-term effect of acquiring genetic risk information. Future research approaches should take this temporary and context-sensitive personal aspects into consideration, not forgetting that perceptions of risk, worry, severity, and control vary across diseases (8). We argue that a longitudinal approach is essential to empirically measure how behaviors, personal attitudes, and preferences change over time. This may provide relevant information for stakeholders to find effective strategies to interact with citizens and truly enhance individual empowerment. In fact, only if psycho-cognitive traits, needs and beliefs of the individual are taken into account, it is possible to achieve a level of actual awareness and informed health decisions.