Exploring the emotional and behavioural reactions to receiving personalized melanoma genomic risk information: a qualitative study

Abstract

Summary Background There is a need for greater understanding of the spectrum of emotional and behavioural reactions that individuals in the general population may experience in response to genomic testing for melanoma risk. Objectives To explore how individuals in the general population respond to receiving personalized genomic risk of melanoma. Methods Semistructured interviews were undertaken with 30 participants (aged 24–69 years, 50% female, 12 low risk, eight average risk, 10 high risk) recruited from a pilot trial in which they received personalized melanoma genomic risk information. We explored participants’ emotional and behavioural responses to receiving their melanoma genomic risk information. The qualitative data were analysed thematically. Results Many participants reported a positive response to receiving their melanoma genomic risk, including feelings of happiness, reassurance and gaining new knowledge to help manage their melanoma risk. Some participants reported short‐term negative emotional reactions that dissipated over time. Most individuals, particularly those who received average or high‐risk results, reported making positive behaviour changes to reduce their melanoma risk. Emotional and behavioural responses were linked to participants’ expectations for their risk result, their pre‐existing perception of their own melanoma risk, their existing melanoma preventive behaviours and their genomic risk category. Conclusions Personalized melanoma genomic risk information alongside education and lifestyle counselling is favourably received by people without a personal history and unselected for a family history of melanoma. Participants described increased knowledge and awareness around managing skin cancer risk and improved sun protection and skin examination behaviours. Any initial feelings of distress usually dissipated over time.

The personal touch: does the communication method affect response to melanoma genetic risk?

“…A genetic counsellor communicated the information by telephone, and participants received an information booklet. A number of interesting findings emerged from this study: high‐risk individuals reported short‐term distress which resolved quickly; response to risk was influenced by pre‐existing expectations and, the majority of high‐risk and average‐risk individuals reported positive improvements in sun‐protective behaviours …”

“…In the current issue of the BJD , Fenton and colleagues explore the impact of melanoma risk communication . This qualitative study involved semi structured interviews with 30 individuals, never diagnosed with melanoma, who had received polygenic melanoma risk scores (categorized as low, average or high risk).…”

Take 10: ten qualitative studies on under‐researched groups and hard‐to‐reach issues in dermatology

“…Authors responded to our challenge with a wider range of submissions and almost double the number submitted last time, showing the growing interest in qualitative research in this field. Our second spotlight for summer 2019 showcases 10 studies, comprising a complementary mix of six original articles and four research letters . These papers involve interdisciplinary authorship teams from dermatology, psychology, general practice, nursing, public health and applied health services research in Australia, Germany, the Netherlands, the Republic of Ireland, the U.K. and the U.S.A.…”

“…Six papers, demonstrate qualitative methods’ capacity to access psychological and social issues that are difficult to reach with traditional questionnaire/survey research, and the capability to investigate the portrayal and experience of the skin in the online world. Fox et al .…”

“…Three studies in this group of six are informed by psychological models, and enable access to particularly sensitive issues. Underpinned by theoretical perspectives on appearance ideals and stigmatization, Pasterfield et al .…”