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J Genet Couns. 2018 Apr;27(2):370-380. doi: 10.1007/s10897-017-0183-7. Epub 2017 Dec 3.

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

Author information

1
Cancer Epidemiology and Prevention Research, Sydney School of Public Health, The University of Sydney, Level 6 - North, The Lifehouse, 119-143 Missenden Rd, Camperdown, NSW, 2050, Australia.
2
The Centre for Genetics Education, NSW Health, Sydney, Australia.
3
Centre for Medical Psychology and Evidence-based Decision-making, School of Psychology, The University of Sydney, Camperdown, Australia.
4
Crown Princess Mary Cancer Centre, Westmead Hospital, Sydney, Australia.
5
Sydney Medical School, The University of Sydney, Camperdown, Australia.
6
Centre for Cancer Research, The Westmead Institute for Medical Research, Sydney, Australia.
7
Cancer Epidemiology and Prevention Research, Sydney School of Public Health, The University of Sydney, Level 6 - North, The Lifehouse, 119-143 Missenden Rd, Camperdown, NSW, 2050, Australia. anne.cust@sydney.edu.au.
8
Melanoma Institute Australia, The University of Sydney, Camperdown, Australia. anne.cust@sydney.edu.au.

Abstract

Communicating personalized genomic risk results for common diseases to the general population as a form of tailored prevention is novel and may require alternative genetic counseling service delivery models. We describe the development and evaluation of a communication protocol for disclosing melanoma genomic risk information to the asymptomatic general population and assess participants' satisfaction and acceptability. Participants (n = 117) were aged 22-69 years, living in New South Wales, Australia and unselected for family history. They provided a saliva sample and had genomic testing for melanoma for low to moderate penetrant melanoma susceptibility variants in 21 genes. Participants could choose to receive their results from a genetic counselor via telephone, followed by a mailed booklet or to receive their risk result via mailed booklet only with a follow-up call for those at high risk. A follow-up questionnaire was completed by 85% of participants 3-months later. Most participants (80%) elected to receive their result via telephone. Participants were highly satisfied with the delivery of results (mean 3.4 out of 4, standard deviation 0.5), and this did not differ by delivery mode, risk category, age or sex. On follow-up, 75% accurately recalled their risk category, 6% indicated a preference for a different delivery mode, either electronic or face-to-face. The process of disclosing genomic risk results to the general population over the telephone with accompanying written material was feasible and acceptable, and may be useful for communicating polygenic risk for common diseases in the context of increasing demands for genomic testing.

KEYWORDS:

Communication protocol; Genetic counseling; Genomic testing; Melanoma; Patient satisfaction; Service delivery model; Telephone

PMID:
29199389
DOI:
10.1007/s10897-017-0183-7

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