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Perceptions of genetic research and testing among members of families with an increased risk of malignant melanoma

Branstrom, Richard; Kasparian, Nadine A.; Affleck, Paul; Tibben, Aad; Chang, Yu-mei; Azizi, Esther; Baron-Epel, Orna; Bergman, Wilma; Chan, May and Davies, John, et al. (2012) In European Journal of Cancer 48(16). p.3052-3062
Abstract
Background: Several melanoma susceptibility genes have been identified. As part of the international genetic research programme of the GenoMEL consortiums research on genetic mutations in melanoma families, the aim of this study was to examine family members' views about their risk of melanoma, gene testing and genetic research. Methods: Self-report data were gathered using online and paper-based surveys available in four languages among 312 individuals (62% from Europe, 18% from Australia, 13% from the United States of America (USA) and 7% from Israel). Results: Fifty three percent had been diagnosed with a melanoma, and 12% had a positive susceptibility gene test result. Respondents with many moles and freckles were more likely to... (More)
Background: Several melanoma susceptibility genes have been identified. As part of the international genetic research programme of the GenoMEL consortiums research on genetic mutations in melanoma families, the aim of this study was to examine family members' views about their risk of melanoma, gene testing and genetic research. Methods: Self-report data were gathered using online and paper-based surveys available in four languages among 312 individuals (62% from Europe, 18% from Australia, 13% from the United States of America (USA) and 7% from Israel). Results: Fifty three percent had been diagnosed with a melanoma, and 12% had a positive susceptibility gene test result. Respondents with many moles and freckles were more likely to perceive themselves at risk for developing melanoma (odds ratio [OR](Freckles) = 2.24 with 95% confidence interval [CI] = 1.18-4.26; ORMany (moles) = 6.92, 95% CI = 2.37-20.23). Respondents who had received a non-informative (negative) genetic test result were much less likely to perceive themselves at increased risk (OR = 0.17, 95% CI = 0.04-0.73). Safe-guards were perceived as important to protect genetic information, but there was also support for the storage and exchange of such information. Overall, respondents were in favour of genetic testing, even if current knowledge about melanoma risk genes is still limited. Contrary to previous studies, participants reported that a non-informative (negative) genetic test result, although not necessarily indicative of lower risk of melanoma, would be likely to reduce their practise of preventive behaviours. Conclusions: Participants were influenced by their phenotype and test results in risk estimations. They expressed positive views on genetic research and towards genetic testing, but reported that a non-informative (negative) test result might be associated with an (erroneous) perception of reduced risk and fewer preventive behaviours. These results highlight the urgency of improving the quality of genetic counselling and increasing the effectiveness of communication regarding genetic test results. (C) 2012 Elsevier Ltd. All rights reserved. (Less)
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keywords
Genetic risk, Genetic testing, Genetic research, Risk perception, Melanoma, Sun protection
in
European Journal of Cancer
volume
48
issue
16
pages
3052 - 3062
publisher
IFAC & Elsevier Ltd.
external identifiers
  • wos:000310569100014
  • scopus:84867573137
ISSN
1879-0852
DOI
10.1016/j.ejca.2012.05.017
language
English
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yes
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30f04b8c-79a0-4fef-8ad1-72685f989371 (old id 3388311)
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2013-02-01 07:03:39
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@article{30f04b8c-79a0-4fef-8ad1-72685f989371,
  abstract     = {Background: Several melanoma susceptibility genes have been identified. As part of the international genetic research programme of the GenoMEL consortiums research on genetic mutations in melanoma families, the aim of this study was to examine family members' views about their risk of melanoma, gene testing and genetic research. Methods: Self-report data were gathered using online and paper-based surveys available in four languages among 312 individuals (62% from Europe, 18% from Australia, 13% from the United States of America (USA) and 7% from Israel). Results: Fifty three percent had been diagnosed with a melanoma, and 12% had a positive susceptibility gene test result. Respondents with many moles and freckles were more likely to perceive themselves at risk for developing melanoma (odds ratio [OR](Freckles) = 2.24 with 95% confidence interval [CI] = 1.18-4.26; ORMany (moles) = 6.92, 95% CI = 2.37-20.23). Respondents who had received a non-informative (negative) genetic test result were much less likely to perceive themselves at increased risk (OR = 0.17, 95% CI = 0.04-0.73). Safe-guards were perceived as important to protect genetic information, but there was also support for the storage and exchange of such information. Overall, respondents were in favour of genetic testing, even if current knowledge about melanoma risk genes is still limited. Contrary to previous studies, participants reported that a non-informative (negative) genetic test result, although not necessarily indicative of lower risk of melanoma, would be likely to reduce their practise of preventive behaviours. Conclusions: Participants were influenced by their phenotype and test results in risk estimations. They expressed positive views on genetic research and towards genetic testing, but reported that a non-informative (negative) test result might be associated with an (erroneous) perception of reduced risk and fewer preventive behaviours. These results highlight the urgency of improving the quality of genetic counselling and increasing the effectiveness of communication regarding genetic test results. (C) 2012 Elsevier Ltd. All rights reserved.},
  author       = {Branstrom, Richard and Kasparian, Nadine A. and Affleck, Paul and Tibben, Aad and Chang, Yu-mei and Azizi, Esther and Baron-Epel, Orna and Bergman, Wilma and Chan, May and Davies, John and Ingvar, Christian and Kanetsky, Peter A. and van Leeuwen, Evert and Olsson, Håkan and Gruis, Nelleke A. and Brandberg, Yvonne and Newton-Bishop, Julia},
  issn         = {1879-0852},
  keyword      = {Genetic risk,Genetic testing,Genetic research,Risk perception,Melanoma,Sun protection},
  language     = {eng},
  number       = {16},
  pages        = {3052--3062},
  publisher    = {IFAC & Elsevier Ltd.},
  series       = {European Journal of Cancer},
  title        = {Perceptions of genetic research and testing among members of families with an increased risk of malignant melanoma},
  url          = {http://dx.doi.org/10.1016/j.ejca.2012.05.017},
  volume       = {48},
  year         = {2012},
}