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Rigshospitalet - a part of Copenhagen University Hospital
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Direct to consumer genetic testing in Denmark-public knowledge, use, and attitudes

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Direct to consumer genetic testing (DTC-GT) is offered by commercial companies, but the use in the general population has only been sparsely investigated. A questionnaire was sent to 2013 representative Danish citizens asking about their awareness and use of DTC-GT. Individuals who had undergone a genetic test were interviewed to determine if the results had been understood correctly. A pilot study with 2469 questionnaires was performed before this study. In total, 45.4% of the individuals (n = 913/2013) had knowledge about DTC-GT and 2.5% (n = (18 + 5)/913) previously had a genetic test by a private company and 5.8% through the public health care system (n = (48 + 5)/913). Curiosity about own genetic information was the most frequent motivation (40.9%, n = 9/22) as well as knowledge of ancestry (36.4%, n = 8/22) and advice about lifestyle, exercise, or diet (36.4%, n = 8/22). Test of own disease risk was given as a reason in 27.3% (n = 6/22) and seeking possible explanation of specific symptoms in 13.6% (n = 3/22). 50% (n = 11/22) answered that they had become concerned after the test, and 17.4% (n = 4/23) had consulted their GP. Interviews in a subset of respondents from the pilot study revealed problems with understanding the results. One problem was how to interpret the genetic test results with respect to individual risk for a disease. For example, the difference between disease causing genetic variants in monogenetic diseases versus statistical risks by SNPs in multifactorial diseases was not understood by the respondents.

Original languageEnglish
JournalEuropean journal of human genetics : EJHG
Volume29
Issue number5
Pages (from-to)851-860
ISSN1018-4813
DOIs
Publication statusPublished - May 2021

ID: 65147529