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

Abstract

Aim: To explore the potential emotional and behavioural impact of providing information on personalised genomic risk to the public, using melanoma as an example, to aid research translation. Methods: We conducted four focus groups in which 34 participants were presented with a hypothetical scenario of an individual's lifetime genomic risk of melanoma (using the term 'genetic risk'). We asked about understanding of genetic risk, who would choose to receive this risk information, potential emotional and behavioural impacts, and other concerns or potential benefits. Data were analysed thematically. Results: Participants thought this risk information could potentially motivate preventive behaviours such as sun protection, and related it to screening for other diseases such as breast cancer. Factors identified as influencing the decision to receive genetic risk information included education level, children, age and gender. Participants identified potential negative impacts on the recipient such as anxiety and worry, and proposed that this could be mitigated by providing additional explanatory and prevention information, and contact details for a health professional to discuss further. Participants' concerns included workplace and insurance discrimination. Conclusion: Participants recognised the potential for both positive and negative emotional and behavioural impacts related to receiving information on personalised genomic risk of melanoma. INTRODUCTIONThe potential for personalised genomic risk information to motivate behaviour change and promote health among the public is a burgeoning area of research [1,2]. Social and behavioural theory suggests that the highly personalised nature of providing genomic risk information may be a more powerful motivator of behaviour change than standard prevention approaches [3]. However, this information might be interpreted in different ways by recipients, which could cause them to worry or feel that illness is inevitable.

A Pilot Randomized Controlled Trial of the Feasibility, Acceptability, and Impact of Giving Information on Personalized Genomic Risk of Melanoma to the Public

“…One ethical concern about delivering genomic risk information is that those at lower risk may respond by becoming complacent or adopting harmful behaviors, but this has not been borne out in previous studies (13). Our previous focus group research (50) suggested that potential, unintended negative effects of genomic risk information could be minimized through the provision of educational information about mela-noma risk and prevention alongside the personalized risk information, as we did.…”

Does personalized melanoma genomic risk information trigger conversations about skin cancer prevention and skin examination with family, friends and health professionals?

“…identified barriers to communicating about melanoma risk such as a need for additional resources on the rationale for implementing preventive behaviours, and practical ways to facilitate discussions about preventive behaviours, particularly with younger family members . These were not identified as barriers in our study; however, our earlier focus group research did identify the need for information about practical ways to reduce risk, and this information had consequently been provided to participants in our study alongside their genomic risk information.…”

Development and Evaluation of a Telephone Communication Protocol for the Delivery of Personalized Melanoma Genomic Risk to the General Population

“…The communication protocol was based on findings from our focus group study that explored communication strategies for genomic risk information (Smit et al 2016;Smit et al 2015), literature on telephone genetic counseling (Baumanis et al 2009;Christensen et al 2011;Peshkin et al 2016) and a protocol developed by Patrick-Miller et al (2014) for disclosing BRCA1/2 test results by telephone. Patrick-Miller et al's (2014) protocol was designed to be adaptable to the communication of genetic and genomic test results and associated risk reduction strategies.…”

“…Personalized genomic testing for asymptomatic individuals could be used to tailor disease prevention and screening of individuals based on their genotype (Burton et al 2013;McBride et al 2012), and may be used to motivate risk appropriate preventative and early detection behaviors (Smit et al 2017;Smit et al 2015). The genetic counseling model of providing pre and post-test counseling via face-to-face sessions to individuals undergoing genetic testing for rare high-penetrance diseases is the most common service delivery model used in Australia and internationally (Cohen et al 2013;Godard et al 2003; Human Genetics Society of Australasia 2012).…”