Loredana Covolo*, Section of Hygiene, Epidemiology and Public Health - Department of Experimental and Applied Medicine - University of Brescia, Brescia, Italy Georgia Martignone, Section of Hygiene, Epidemiology and Public Health - Department of Experimental and Applied Medicine - University of Brescia, Brescia, Italy Grazia Orizio*, Section of Hygiene, Epidemiology and Public Health - Department of Experimental and Applied Medicine - University of Brescia, Brescia, Italy Luigi Caimi, Quality and Technology Assessment, Governance and Communication Strategies in Health Systems - Study and Research Centre – University of Brescia, Brescia, Italy Peter Schulz, Institute of Communication and Health – University of Lugano, Lugano, Switzerland Umberto Gelatti*, Section of Hygiene, Epidemiology and Public Health - Department of Experimental and Applied Medicine - University of Brescia, Brescia, Italy Track: Research Presentation Topic: Consumer empowerment, patient-physician relationship, and sociotechnical issues Presentation Type: Oral presentation Submission Type: Single Presentation Building: MaRS Centre, 101 College Street, Toronto, Canada Room: CR3 Date: 2009-09-18 09:00 AM – 10:30 AM Last modified: 2009-08-14

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Background. An increasing number of websites offers genetic testing directly to consumer (DTC). The limited evidence about the possible improvement of patient health by genetic test and the complexity of test result interpretation could lead to further workup that could increase the expenditure of health care resources. Performing these tests without proper counseling support, could alter perceptions of risk and health behavior, cause psychological morbidity and have a significant impact on the demand for healthcare. Other concerns include issues of privacy and confidentiality and the potential for discrimination of individuals or communities. In order to evaluate possible implications of genetic testing on Public Health, we investigated the availability and the accessibility of genetic services offered DTC on the Internet.
Methods. A systematic World Wide Web search was carried out in August 2008 using ©Google, ©Yahoo!, and ©Cuil search engines. The following keywords were used: “genetic” or “DNA” and “test” or “testing” combined with “direct-to-consumer”, “direct-to-patient“, “at-home” and “service”. We only selected health-related websites selling susceptibility genetic tests and/or pharmacogenetic tests. Websites were analyzed using a content analysis method, regarding their geographical characteristics, communication channels, conditions tested, typology of the offer, disclosure of risks and advantages, result reporting, availability of counseling, uses of genetic information and selling arguments.
Results. A total of 31 websites were found, mainly located in the USA: of these, 51% offered also non health-related tests and 32% had an health-care professional section dedicated. Usually (48%), genetic tests were offered individually, and in 44% consumers could have a special offer. Private at-home context was the most frequent location of sample collection. After returning the kit to the company, consumers would receive their test results mainly online (41%), through a personal account. Only 1 site required the results to be sent to consumers’ health care practitioners, although 64% encouraged consumers to contact a health care practitioner for result interpretation. In 87%, consumers were not asked to answer health and lifestyle questionnaire before buying the service. Only 32% of websites offered a service of counseling, 26% mentioned specific risks relating to testing and 32% declared future use of genetic information. Patients’ empowerment, simplicity of sample collection, privacy policy and the availability of registered and fully accredited clinical laboratory, were selling arguments most frequently used.
Conclusions. The Internet availability of DTC health related genetic tests has the potential to bring the benefits of genetic testing to a broad public. At the same time the availability of genetic tests with uncertain clinical value, the lack of a constant genetic counseling, raise concerns about how such tests could alter consumers’ health perception and behaviour and expose them to privacy and familial implications. Moreover, an increase in consumer interest in DTC genetic testing and the complexity of test result interpretation could lead patients to address their physicians, which would place the primary care system under additional stress, distort the patient-doctor relationship and generate demand with no evidence of health benefits.