Direct-to-Consumer Genetic Test on the Internet: Where Are We Going? A Systematic Review.
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Abstract
Background: For several years, direct-to-consumer (DTC) genetic tests can easily be purchased through the internet independently of a physician referral or approval for testing, with the possibility to get genetic information outside the clinical context . There is a broad debate about their validity, their impact on individuals and what people know and perceive about it. However, there has been no systematic review on this issue.
Objective: The aim of the study was to perform a systematic review of the scientific literature dealing with direct-to-consumer genetic testing to evaluate the state of the art regarding this topic.
Methods: We carried out the research through 3 electronic databases (PubMed, Web of Knowledge and Embase) and the gray literature on the Internet using Google Scholar according to Prisma Statement Checklist. We used “Direct-to-consumer genetic test†as keyword. We selected articles in English with original data, dealing with DTC genetic testing, with no publication time limits.
Results: To date, we obtain 6677 records of which 334 relevant and we selected 72 articles. On the basis of the main focus treated in the articles, we identified four categories: 1) articles investigating knowledge on, attitude to use and perception of DTC genetic tests (n=43); 2) articles analyzing web sites selling DTC genetic tests (n=16); 3) articles focusing on possible impact of the genetic risk information (n=10) and 4) articles analyzing the quality of the tests (n=3).
Conclusion: Up to now, there are few articles with data on DTC genetic tests. Most of them analyze the attitude, knowledge and perception about DTC genetic tests highlighting on the one hand an interest in using DTC genetic test and on the other hand the need of an healthcare professional in order to help interpreting the results of the test. The articles investigating the content analysis of the websites selling these tests are in agreement that the information provided by the companies about genetic tests are not completely comprehensive and exhaustive for the consumer. As regards the possibility that risk information can modify consumer health behavior there are few studies and the results are contrasting. Data from studies investigating the quality of the tests offered confirm that they are not informative with little predictive power and so not yet useful in measuring properly genetic risk.
Objective: The aim of the study was to perform a systematic review of the scientific literature dealing with direct-to-consumer genetic testing to evaluate the state of the art regarding this topic.
Methods: We carried out the research through 3 electronic databases (PubMed, Web of Knowledge and Embase) and the gray literature on the Internet using Google Scholar according to Prisma Statement Checklist. We used “Direct-to-consumer genetic test†as keyword. We selected articles in English with original data, dealing with DTC genetic testing, with no publication time limits.
Results: To date, we obtain 6677 records of which 334 relevant and we selected 72 articles. On the basis of the main focus treated in the articles, we identified four categories: 1) articles investigating knowledge on, attitude to use and perception of DTC genetic tests (n=43); 2) articles analyzing web sites selling DTC genetic tests (n=16); 3) articles focusing on possible impact of the genetic risk information (n=10) and 4) articles analyzing the quality of the tests (n=3).
Conclusion: Up to now, there are few articles with data on DTC genetic tests. Most of them analyze the attitude, knowledge and perception about DTC genetic tests highlighting on the one hand an interest in using DTC genetic test and on the other hand the need of an healthcare professional in order to help interpreting the results of the test. The articles investigating the content analysis of the websites selling these tests are in agreement that the information provided by the companies about genetic tests are not completely comprehensive and exhaustive for the consumer. As regards the possibility that risk information can modify consumer health behavior there are few studies and the results are contrasting. Data from studies investigating the quality of the tests offered confirm that they are not informative with little predictive power and so not yet useful in measuring properly genetic risk.
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