P2P Foundation

The new issue of the Journal of Science Communication, an online and open access journal devoted to the relationship between science and the media, contains a collection of short articles on genomics entitled Know your genes. The marketing of direct-to-consumer genetic testing. Edited by Alessandro Delfanti, this collection includes papers by scholars such as Jenny Reardon, Timothy Caulfield, Marina Levina, Roswell Quinn, Pascal Ducournau, Claire Beaudevin, Donato Ramani, and Chiara Saviane.

Genetic testing promises to put the ability to decide about our life choices in our hands, as well as help solve crucial health problems by preventing the insurgence of diseases. But what happens when these exams are managed by private companies in a free market? Public communication and marketing have proven to be crucial battlefields on which companies companies need to engage in order to emerge. This issue of JCOM tries to shed some light on the communication and marketing practices used by private companies that sell direct-to-consumer genetic testing, from single genetic mutations to whole genome sequencing.

As Levina and Quinn point out, “these companies radically expand the definition of a patient by claiming all consumers are simply pre-symptomatic patients. Moreover, by placing genomic data on both the marketplace and cyberspace, personal genomic companies seek to create new avenues of research that alter how we define (and access) research agendas and human subjects.”

In her article on the deeper relationship between genomics and communication, Jenny Reardon argues that “the communication problem these companies face runs much deeper. It is a problem that lies at the heart of any genomics: the very understanding of communication and information around which genomics is built. While the value of genomic information for persons has been widely questioned, questions about the very notion of information that undergirds the production of genomic information rarely, if ever, has been broached.“