Title:	ONLINE DIRECT-TO-CONSUMER GENETIC TESTING: ANALYSIS OF THE WEBSITES
Author(s):	Loredana Covolo, Georgia Martignone, Grazia Orizio, Luigi Caimi , Peter Schulz , Umberto Gelatti
ISBN:	978-972-8939-16-8
Editors:	Mário Macedo
Year:	2010
Edition:	Single
Keywords:	Genetic testing, direct-to-consumer, Internet
Type:	Short Paper
First Page:	264
Last Page:	268
Language:	English
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Full Contents:	click to dowload
Paper Abstract:	The number of companies offers genetic testing directly to consumer (DTC) over the Internet is constantly increasing. Diagnostic and predictive possibilities made available by genetic testing have caused debates about negative health and psychological consequences due to a misleading interpretation of information provided by the websites. The research is an updated analysis of websites offering DTC genetic tests and it aimed to describe the characteristics and the indications for testing provided by the websites, including presentation of risks and benefits of these tests. We focused the analysis on susceptibility genetic tests because of their potential impact on public health and prevention mainly considering that their scientific evidence and clinical relevance are still doubtful. A systematic World Wide Web search was carried out in November 2008 subsequently updated in April 2010 using ©Google and ©Yahoo! search engines. Websites were analyzed using a content analysis method. A total of 40 websites were found, mainly located in USA. Genetic tests for susceptibility to cardiovascular disease were the most frequent on offer. Only 53% of the sites clearly stated that susceptibility genetic testing was not aimed at diagnosing disease. Test results were communicated mainly through a personal online account or by e-mail (45%). Only one website required the results to be sent to the consumer’s health care practitioner, although 68% encouraged consumers to contact a health care practitioner for result interpretation. Only 35% offered a counselling service, 20% mentioned specific risks relating to testing and 35% declared future use of genetic information. The major result that appears from this study is the lack of exhaustive information provided by the websites necessary to a correct interpretation of the meaning and results of a genetic test. This fact raises concerns about how such tests could alter consumers’ health perception and behaviour and impact on the demand for healthcare.
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