The public, including lay members who have no personal or familial experience with genetic testing or diagnosis, as well as individuals who have had such experiences, face many intrinsic decisions relating to understanding genetics. With the sequencing of the human genome and genetic science discoveries relating genes to cancer, heart disease, and diabetes, the scope of such decisions broadened from prenatal genetic testing related to reproductive choices to genetic testing for contributors to common causes of morbidity and mortality. The decision about whether to seek genetic testing encompasses concerns about stigma and discrimination. These issues lead some who can afford the cost to seek screening through online direct-to-consumer sites rather than in clinical settings. Many who may benefit from genetic testing lack awareness of family health history that could guide physicians to recommend these diagnostic tests. Families may not discuss health history due to genetic illiteracy, with the public’s genetic illiteracy increasing their illness uncertainty and decreasing the likelihood that physicians will engage in conversations about personalized medicine with their patients. Physicians may nonetheless order genetic tests based on patients’ symptoms, during preoperative workups, or as part of opportunistic screening and assessment associated with a specific genetic workup. Family members who receive positive genetic test results may not disclose them to life partners, other family members, or insurance companies based on worries and anxiety related to their own identity, as well as a lack of understanding about their family members’ risk probability. For many, misguided beliefs that genes absolutely determine health and disease status arise from media translations of genetic science. These essentialist beliefs negatively relate to personal actions to limit genetic expression, including failure to seek medical care, while contributing to stereotypes and stigma communication. As medical science continues to reveal roles for genes in health across a broad spectrum, communicating about the relationships that genes have for health will be increasingly complex. Policy associated with registering, monitoring, and controlling the activities of those with genetic mutations may be coercive and target individuals unable to access health care or technology. Communicating about genes, health, and risk will thus challenge health communicators throughout the 21st century.
Roxanne L. Parrott, Amber K. Worthington, Rachel A. Smith, and Amy E. Chadwick
Jada G. Hamilton, Jennifer L. Hay, and Colleen M. McBride
It was expected that personalized risk information generated by genetic discovery would motivate risk-reducing behaviors. However, though research in this field is relatively limited, most studies have found no evidence of strong negative nor positive psychological or behavioral influences of providing genetic information to improve individual health behaviors. As noted by systematic reviews and agenda-setting commentaries, these null findings may be due to numerous weaknesses in the research approaches taken to date. These include issues related to study samples and design, as well as the motivational potency of risk communications. Moreover, agenda-setting commentaries have suggested areas for improvement, calling for expanded consideration of health outcomes beyond health behaviors to include information exchange and information-seeking outcomes and to consider these influences at the interpersonal and population levels. A new generation of research is adopting these recommendations. For example, there is a growing number of studies that are using communication theory to inform the selection of potential moderating factors and their effects on outcomes in understanding interpersonal effects of shared genetic risk. Researchers are taking advantage of natural social experiments to assess the general public’s understanding of genetics and inform approaches to improve their facility with the information. Additionally, there are examples of risk communication approaches addressing the complexity of genetic and environmental contributors to health outcomes. Although the pace of this translation research continues to lag behind genetic discovery research, there are numerous opportunities for future communications research to consider how emerging genomic discovery might be applied in the context of health promotion and disease prevention.