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Title: The informational aspects of direct-to-consumer genetic tests
Authors: Egglestone, Corin
Keywords: Information science
Genetic tests
Genetic testing
Personalised genomics
Health behaviour
Health anxiety
Health information
Content analysis
Behavioural change
Information seeking
Informaiton behaviour
Information searching
Informed consent
Issue Date: 2013
Publisher: © Corin Egglestone
Abstract: Background: Direct-to-consumer (DTC) genetic tests are tests sold directly to consumers, normally without the involvement of healthcare professionals, which aim to provide consumers with their relative genetic risk for various complex diseases. Providers claim that this information will enable and encourage consumers to improve their health behaviour in order to reduce their likelihood of contracting diseases for which they are at an increased genetic risk. However, there are many criticisms and concerns about DTC genetic tests in the literature. Two common concerns are the lack of positive effects, and possible negative effects, that the information generated by the tests may have on consumers health behaviour and health anxiety, and the identified poor quality of information provision on the websites of providers of DTC genetic tests. Although the literature contains some research in these areas it is noticeably limited and occasionally contradictory. Aim and Methods: The aim of the research was to investigate the informational aspects of direct-to-consumer genetic tests, including the provision of information by the companies, consumers information needs and information-seeking behaviour and the effect of the information generated by the tests on health behaviour and health anxiety. The research consisted of three studies: a survey of 275 consumers and potential consumers of DTC genetic tests, in-depth email interviews with 36 consumers of DTC genetic tests and a content analysis of the information provided on all identified providers websites. Results: Positive or neutral changes in health behaviour were identified in a large minority of respondents who had been exposed to genetic risk information, along with the mechanisms by which the information prompted or contributed to change. A minority reported a change in health anxiety, mainly but not exclusively a decrease, with mechanisms again identified. Consumers reported a wide variety of information needs, the most common of which were information to do with the coverage and accuracy of the tests. The provision of information on providers websites varied considerably, both between and within providers, but was generally poor. However, most consumers used other sources alongside these websites, the most common of which was blogs. Conclusions: The results suggest that concerns about possible negative effects of the information generated by the tests are unfounded and that a large minority of consumers have improved health behaviour and decreased health anxiety after purchase. The results also suggest that concern about information provision on providers websites is justified; although this is mitigated by consumers general use of other sources alongside the websites, it is likely that a substantial number of consumers do not have access to enough information to give fully informed consent to the test.
Description: A Doctoral Thesis. Submitted in partial fulfilment of the requirements for the award of Doctor of Philosophy of Loughborough University.
Sponsor: Department of Information Science
URI: https://dspace.lboro.ac.uk/2134/16403
Appears in Collections:PhD Theses (Information Science)

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