Provision of PRAs with a pedigree was associated with increased willingness to share FHH information with providers compared to those receiving a pedigree only. Interpretation of the pedigree requires a conceptual understanding of the complex interactions resulting in disease risk. Levels of genetic knowledge required to interpret the pedigree may be limited among the general public,18,19
as many have insufficient levels of health literacy.20
Thus, providing an interpretation of family risk (i.e., PRAs) can potentially enhance the public’s understanding of the information, thereby motivating them to share feedback.
Considering that healthcare providers may have difficulty interpreting the pedigree6, 21,22
due to limited training in this domain,21,23
provision of disease-specific PRAs may further enhance care in the primary care setting24
Provision of behavioral recommendations tailored to current health behaviors did not appear to influence participants’ willingness to share feedback with their provider. However, such information may be important in identifying risk-reducing behaviors for participants. Future research should examine whether these recommendations motivate individuals to adopt healthful behaviors, particularly if shared with family members.25
Parenthood, the only demographic predictor of willingness to share, is an important predictor of several health-related behaviors including uptake of genetic services.26
Because FHH-based disease risk is conferred through generations, parents may be modeling health seeking behavior in the hopes of reducing their own risk and that of their children.27,28
The literature suggests Spanish language is a substantial barrier to patient–provider health communications for Hispanic populations29,30
. Surprisingly, survey language was not significantly associated with willingness to share feedback with a provider in the current study; this conflicting result may reflect regional differences in providers’ cultural competency.
All participants were adults of Mexican origin residing in multigenerational households; thus, findings may not generalize to individuals with different familial and cultural backgrounds. The limited impact of adding behavioral recommendations may be due to reduced statistical power; future research with a larger sample will provide more information regarding the unique contribution of behavioral recommendations. The short time-interval between assessment and feedback receipt limits the ability to evaluate whether willingness to share leads to actual FHH information sharing within the clinical setting.
Complete and accurate FHH is a key component of personalized health care. Given the limited time to obtain detailed FHH during the clinical encounter, identifying avenues for the public to collect this information outside of the clinical setting, in a format that increases individuals’ willingness to share the information with their providers, is critical. The results herein suggest that PRAs that ascribe meaning to the constellation of disease observed within the family appears to be a key component to sharing this information, and thus a crucial aspect to the promise of personalized health care.