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Perceptions of gene...
Perceptions of genetic research and testing among members of families with an increased risk of malignant melanoma
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- Branstrom, Richard (author)
- Karolinska Institutet
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Kasparian, Nadine A. (author)
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Affleck, Paul (author)
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Tibben, Aad (author)
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Chang, Yu-mei (author)
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Azizi, Esther (author)
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Baron-Epel, Orna (author)
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Bergman, Wilma (author)
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Chan, May (author)
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Davies, John (author)
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- Ingvar, Christian (author)
- Lund University,Lunds universitet,Kirurgi, Lund,Sektion V,Institutionen för kliniska vetenskaper, Lund,Medicinska fakulteten,Surgery (Lund),Section V,Department of Clinical Sciences, Lund,Faculty of Medicine
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Kanetsky, Peter A. (author)
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van Leeuwen, Evert (author)
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- Olsson, Håkan (author)
- Lund University,Lunds universitet,Medicinsk onkologi,Sektion I,Institutionen för kliniska vetenskaper, Lund,Medicinska fakulteten,Medical oncology,Section I,Department of Clinical Sciences, Lund,Faculty of Medicine
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Gruis, Nelleke A. (author)
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- Brandberg, Yvonne (author)
- Karolinska Institutet
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Newton-Bishop, Julia (author)
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(creator_code:org_t)
- Elsevier BV, 2012
- 2012
- English.
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In: European Journal of Cancer. - : Elsevier BV. - 1879-0852 .- 0959-8049. ; 48:16, s. 3052-3062
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Abstract
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- 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.
Subject headings
- MEDICIN OCH HÄLSOVETENSKAP -- Klinisk medicin -- Kirurgi (hsv//swe)
- MEDICAL AND HEALTH SCIENCES -- Clinical Medicine -- Surgery (hsv//eng)
- MEDICIN OCH HÄLSOVETENSKAP -- Klinisk medicin -- Cancer och onkologi (hsv//swe)
- MEDICAL AND HEALTH SCIENCES -- Clinical Medicine -- Cancer and Oncology (hsv//eng)
Keyword
- Genetic risk
- Genetic testing
- Genetic research
- Risk perception
- Melanoma
- Sun protection
Publication and Content Type
- art (subject category)
- ref (subject category)
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Branstrom, Richa ...
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Kasparian, Nadin ...
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Affleck, Paul
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Tibben, Aad
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Chang, Yu-mei
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Azizi, Esther
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show more...
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Baron-Epel, Orna
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Bergman, Wilma
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Chan, May
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Davies, John
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Ingvar, Christia ...
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Kanetsky, Peter ...
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van Leeuwen, Eve ...
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Olsson, Håkan
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Gruis, Nelleke A ...
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Brandberg, Yvonn ...
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Newton-Bishop, J ...
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- About the subject
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- MEDICAL AND HEALTH SCIENCES
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MEDICAL AND HEAL ...
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and Clinical Medicin ...
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and Surgery
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MEDICAL AND HEAL ...
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and Clinical Medicin ...
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and Cancer and Oncol ...
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European Journal ...
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Lund University
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Karolinska Institutet