Genetic and Genomic Consultation: Are We Ready for Direct-to-Consumer Telegenetics?
9:550 FRONTIERS IN GENETICS 2018
8 Pages Posted: 26 Dec 2018
Date Written: December 3, 2018
Telegenetics, the application of telemedicine in the context of genetic services, is a growing market. One of the recent developments in this field is the use of direct-to-consumer (DTC) marketing to promote and advertise genetic and genomic consultant services to consumers. Using Google.com, we identified providers that promote their telegenetics services online. By analyzing their websites, we identify and examine key points regarding DTC telegenetics: how are telegenetics services portrayed, how is informed consent obtained, and what protections are offered to clients’ personal health information? We found that the portrayal of a wide range of telegenetics services on providers’ websites is extremely positive. The risks associated with the implementation of telegenetics were rarely mentioned. Consent forms were often unavailable and did not cover all of the relevant information. The measures for protecting clients’ personal health information by telegenetics providers were found to be generally inadequate and weak. We concluded that DTC telegenetics may increase patients’ access to genetic counseling with affordable costs. However, before further developing DTC telegenetics, more research and regulatory improvements are required to guarantee truthful advertising, ensure informed consent, secure personal health data sharing, and warrant adequate privacy protection.
Keywords: telegenetics, telegenomics, direct-to-consumer, genetic services, risks and benefits, privacy, informed consent, consumer protection
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