G L Fenton1, A K Smit1,2,3, L Keogh4, A E Cust1,2. 1. Cancer Epidemiology and Prevention Research, The University of Sydney, NSW, Australia. 2. Melanoma Institute Australia (MIA), The University of Sydney, NSW, Australia. 3. Sydney Health Ethics, Sydney School of Public Health, Faculty of Medicine and Health, The University of Sydney, NSW, Australia. 4. Melbourne School of Population and Global Health, The University of Melbourne, Vic., Australia.
Abstract
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.
RCT Entities:
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.
Authors: Sylvia L Crowder; Acadia W Buro; John Charles A Lacson; Youngchul Kim; Steven K Sutton; Richard G Roetzheim; Susan T Vadaparampil; Marilyn Stern; Peter A Kanetsky Journal: Cancer Prev Res (Phila) Date: 2022-08-01
Authors: Amelia K Smit; Gillian Reyes-Marcelino; Louise Keogh; Kate Dunlop; Ainsley J Newson; Anne E Cust Journal: BMC Public Health Date: 2020-06-29 Impact factor: 3.295
Authors: Amelia K Smit; Martin Allen; Brooke Beswick; Phyllis Butow; Hugh Dawkins; Suzanne J Dobbinson; Kate L Dunlop; David Espinoza; Georgina Fenton; Peter A Kanetsky; Louise Keogh; Michael G Kimlin; Judy Kirk; Matthew H Law; Serigne Lo; Cynthia Low; Graham J Mann; Gillian Reyes-Marcelino; Rachael L Morton; Ainsley J Newson; Jacqueline Savard; Lyndal Trevena; Sarah Wordsworth; Anne E Cust Journal: Genet Med Date: 2021-08-12 Impact factor: 8.822