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

Smit, Amelia K.; Espinoza, David; Newson, Ainsley J; Morton, Rachael L.; Fenton, Georgina; Freeman, Lucinda; Dunlop, Kate; Butow, Phyllis; Law, Matthew H.; Kimlin, Michael G.; Keogh, Louise; Dobbinson, Suzanne; Kirk, Judy; Kanetsky, Peter A.; Mann, Graham J.; Cust, Anne E.

doi:10.1158/1055-9965.epi-16-0395

Cited by 42 publications

(63 citation statements)

References 53 publications

(55 reference statements)

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“…In the parent study, sun‐related behaviours were assessed using validated measures, at baseline and 3 months following genetic results. All three groups reported a decrease in intentional tanning which reached significance in the average‐risk group (the largest group) . This is consistent with interviews where three‐quarters of the average‐ to high‐risk participants reported making positive behavioural changes to reduce their melanoma risk.…”

supporting

confidence: 81%

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

McInerney-Leo

Finnane

2019

Br J Dermatol

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supporting

confidence: 81%

“…). Similarly, in the parent study of the current paper, distress on the Multidimensional Impact of Cancer Risk Assessment was increased in high‐risk individuals alone . The qualitative findings are consistent, with high‐risk individuals reporting a negative initial reaction, which dissipated over time.…”

supporting

confidence: 70%

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

McInerney-Leo

Finnane

2019

Br J Dermatol

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“…This was a substudy of a pilot randomized controlled trial (parent study) that examined the feasibility, acceptability and impact of delivering personalized genomic risk of melanoma information to the public . Details of recruitment have been described in detail previously .…”

Section: Methodsmentioning

confidence: 99%

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

et al. 2019

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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.

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“…Genetic discrimination in access to insurance has occurred [9,[48][49][50][51] and will likely continue to occur without a more robust approach to governance that also explicitly accounts for genomic testing [52] . At a broader level, the perception of genetic discrimination in insurance is also already having an adverse impact [8,12,13] .…”

Section: Resultsmentioning

confidence: 99%

“…Insurance implications are also a concern for many individuals considering participating in medical research involving return of genetic findings, and can be a significant reason for declining to participate [12][13][14][15] .…”

mentioning

confidence: 99%

Genetics and Insurance in Australia: Concerns around a Self-Regulated Industry

Newson

Tiller

Keogh

et al. 2017

Public Health Genomics

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Background: Regulating the use of genetic information in insurance is an issue of ongoing international debate. In Australia, providers of life and other mutually rated insurance products can request applicants to disclose all results from any genetic test. Insurers can then use this information to adjust premiums and make policy decisions. The Australian Financial Services Council (FSC; an industry body) developed and maintains the relevant industry standard, which was updated in late 2016. Aims/Objective: To review the 2016 FSC Standard in light of relevant research and determine the legitimacy of the Australian regulatory environment regarding use of genetic information by insurers. Results: We identified five concerns arising from the 2016 FSC Standard: (1) use of results obtained from research; (2) the requirement for an applicant to disclose whether they are “considering” a genetic test; (3) failure to account for genome sequencing and other technology developments; (4) limited evidence regarding adverse selection; and (5) the inappropriateness of industry self-regulation. Conclusion: Industry self-regulation of the use of genetic information by life insurers, combined with a lack of government oversight, is inappropriate and threatens to impede the progress of genomic medicine in Australia. At this critical time, Australia requires closer government oversight of the use of genetic information in insurance.

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

Abstract: Genomic risk information has potential as a melanoma prevention strategy. Cancer Epidemiol Biomarkers Prev; 26(2); 212-21. ©2016 AACR.

Cited by 42 publications

References 53 publications

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

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

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

Genetics and Insurance in Australia: Concerns around a Self-Regulated Industry

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