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.