Effect of Direct-to-Consumer Genetic Tests on Health Behaviour and Anxiety: A Survey of Consumers and Potential Consumer
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ORIGINAL RESEARCH
Effect of Direct-to-Consumer Genetic Tests on Health Behaviour and Anxiety: A Survey of Consumers and Potential Consumers Corin Egglestone & Anne Morris & Ann O’Brien
Received: 9 April 2012 / Accepted: 18 March 2013 # National Society of Genetic Counselors, Inc. 2013
Abstract Direct-to-consumer (DTC) genetic tests can be purchased over the internet. Some companies claim to provide relative genetic risks for various diseases and thus encourage healthy behaviour. There are concerns that exposure to such information may actually discourage healthy behaviour or increase health anxiety. An online survey was conducted (n= 275). Respondents were composed of individuals who had purchased a DTC genetic test and received their results (consumers, n=189), as well as individuals who were either awaiting test results or considering purchasing a test (potential consumers, n=86). Consumers were asked if their health behaviour or health anxiety had changed after receiving their results. Respondents’ current health behaviour and health anxiety were queried and compared. In total, 27.3 % of consumers claimed a change in health behaviour, all either positive or neutral, with no reported cessation of any existing health behaviour. A change in health anxiety was claimed by 24.6 % of consumers, 85.3 % of which were a reduction. Consumers had significantly better health behaviour scores than potential consumers (p=0.02), with no significant difference in health anxiety. This study points towards an association between receipt of DTC genetic test results and increased adoption of healthy behaviours for a minority of consumers based on self-report, with more mixed results in relation to health anxiety. Keywords Direct-to-consumer . Genetic testing . Health . Behaviour . Anxiety C. Egglestone (*) : A. Morris : A. O’Brien Department of Information Science, Loughborough University, Loughborough, Leicestershire LE11 3TU, UK e-mail: [email protected] A. Morris e-mail: [email protected] A. O’Brien e-mail: [email protected]
Background There are many companies that sell direct-to-consumer (DTC) genetic tests which provide consumers with a personalized genetic risk assessment for a variety of complex diseases (as opposed to tests which only focus on monogenic conditions, nutrigenomics, pharmacogenomics or ancestry testing) based on the screening of a large number of potential single nucleotide polymorphisms associated with these diseases (Bloss et al. 2011a, b; Samuel et al. 2010). Tests are sold directly to consumers, normally with no need for the involvement of health care professionals (Bloss et al. 2011a). Although genetic counselling is occasionally provided [such as with Navigenics (Navigenics 2012)], it is by no means a requirement. Many providers of DTC genetic tests claim that they will enable and encourage consumers to improve their health behaviour in relation to diseases for which they are at an increased risk (cf. 23andMe 2012; deCODEme 2012), although there is a large variation in the informati
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