Communicating Genetic Risk Information for Common Disorders in the Era of Genomic Medicine

Abstract

Communicating genetic risk information in ways that maximize understanding and promote health is increasingly important given the rapidly expanding availability and capabilities of genomic technologies. A well-developed literature on risk communication in general provides guidance for best practices, including presentation of information in multiple formats, attention to framing effects, use of graphics, sensitivity to the way numbers are presented, parsimony of information, attentiveness to emotions, and interactivity as part of the communication process. Challenges to communicating genetic risk information include deciding how best to tailor it, streamlining the process, deciding what information to disclose, accepting that communications may have limited influence, and understanding the impact of context. Meeting these challenges has great potential for empowering individuals to adopt healthier lifestyles and improve public health, but will require multidisciplinary approaches and collaboration.

Exploring the Potential Emotional and Behavioural Impact of Providing Personalised Genomic Risk Information to the Public: A Focus Group Study

“…Receiving genetic risk information can potentially raise emotional concerns, anxiety or feelings of fatalism [3,5]. Our focus group participants believed that a negative emotional or psychological response would be more likely if the recipient misunderstood the personalised genomic risk information.…”

“…A study on communicating genetic risk of Alzheimer's disease found that groups more likely to seek genetic risk assessments for common disorders included women, people of European origin, individuals with a family history of a disease and adults with high education levels [5]. Participants in our study had mixed views as to whether a relevant family history would influence the choice to receive a genomic risk estimate.…”

“…Understanding the potential impact of genomic risk information can also help to contextualise behavioural effects, and plan appropriate implementation strategies for genomic risk information interventions. It is also important to predict who would elect to receive genomic risk information, and the reasons why, in order to effectively tailor the communication of genomic risk information and to maximise its relevance [5].…”

Regulation: The FDA is overcautious on consumer genomics

“…6,7 . A 2010 survey by researchers at Johns Hopkins University in Baltimore, Maryland, of more than 1,000 customers of three companies found that just over one-quarter of people share their results with physicians in the first few months after receiving them.…”

Healthcare professionals’ perceptions of risk in the context of genetic testing for the prediction of chronic disease: a qualitative metasynthesis

“…As genomic medicine advances and is increasingly applied to the prevention and treatment of common disorders with complex genetic and environmental aetiologies (Sparks et al 2014;Wilson and Nicholls 2015), it is likely that a wider range of non-specialist health care professionals (HCPs) will become more involved in the delivery of genetic services. Therefore, it is increasingly important that HCPs develop a thorough understanding of medical genetics (Feero and Green 2011), and are equipped to communicate complex risk information in a way that is disease appropriate, and that takes into consideration the values and needs of patients (Lautenbach et al 2013).…”