AUG 20, 2014 11:45 AM PDT

Ethical, Legal and Social Issues of Direct-to-Consumer Genetic Testing

Speaker

Abstract

Direct-to-consumer (DTC) genetic testing can be understood as including two related aspects: first, the advertising of genetic tests directly to consumers; and second, the direct access or ordering of genetic tests outside of the traditional healthcare setting and often without the intermediate of a healthcare professional. The types of tests sold by these companies include single gene tests, multiple genes tests and genome-wide-testing also known as personal genome scanning, whereby hundreds of thousands to millions of genetic markers (often single nucleotide polymorphisms) are tested throughout the genome. Although not so common, some companies are also now selling whole genome and whole exome sequencing DTC. Although the majority of the popular media coverage and much of the academic debates have focussed on companies selling genome-wide-testing services (from companies such as 23andMe, and in the past deCODE and Navigenics), there are also many DTC genetic testing companies that do not sell this type of testing. Also contributing to the variation in the DTC genetic testing market is the great deal of variation regarding the purpose of the tests on offer; for example, different tests can provide information regarding ancestry, carrier status, disease risk (presymptomatic, prenatal, susceptibility), nutrigenomics or pharmacogenomics. The advent of this commercial offer of genetic testing, raises some new and not so new ethical, legal and social issues (ELSI). In this presentation, I will describe the phenomena of DTC genetic testing, present what advocates and critiques have to say about this offer, and discuss the ELSI.


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AUG 20, 2014 11:45 AM PDT

Ethical, Legal and Social Issues of Direct-to-Consumer Genetic Testing



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