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resource research Media and Technology
Since opening their doors in late 2006, personal genomics (PG) companies have faced skepticism and criticism from influential academic and government circles. While this has posed a clear problem of communication for these companies — one of effective promotion — I argue 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
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TEAM MEMBERS: Jenny Reardon
resource research Media and Technology
Easy, cheap, efficient as online service often are. Direct to Consumer Genetic Testing (DCGT) represents a big evolution towards personalised medicine. If the phenomenon seems to be unstoppable, the first aim of its present and future developments should be the customers’ benefits. A certified quality of the services provided, a clear communication and a well-structured support to customers should be the critical conditions that could transform those online services in something really important: for the individual’s health and the society as a whole.
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TEAM MEMBERS: Donata Ramani Chiara Saviane
resource research Media and Technology
Since the early 2000s, anybody can buy genetic tests, directly sold on the Internet. These tests provide information about susceptibilities to some diseases and/or about ancestry. Thus, this article deals with a new e-market, whose scientific basis (validity of the tests) and status (as medical devices or consumer goods) are currently controversial. On one hand, we describe the tests and the advertisement and marketing strategies used by the companies (we made an inventory of about 40); on the other hand, we discuss several aspects on the basis of interviews conducted with users: first, the
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TEAM MEMBERS: Pascal Ducournau Claire Beaudevin
resource research Media and Technology
Personal Genomics Companies are an emerging form of biotechnology startup that bring rapidly advancing whole genome technologies to a variety of commercial venues. With a combination of direct-to-consumer marketing, social media, and Web 2.0 applications these companies seek to create novel uses, including entertainment, for what is described as predictive medicine – that is the use of genetic marketers to create health forecasts that would allow individual’s healthcare to be tailored to their individual genomic data. In this brief piece, the authors use a critical cultural approach to
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TEAM MEMBERS: Marina Levin Roswell Quinn
resource research Media and Technology
Direct-to-consumer (DTC) genetic testing has generated a great deal of social controversy. While the degree to which DTC testing actually causes harm remains uncertain, there is a consensus that the information provided by these companies should be accurate. Unfortunately, this is often not the case. Indeed, there are misrepresentations associated with all forms of testing, be it for superficial cosmetic services, athletic ability or disease predisposition. Countering this phenomenon will require a wide range of actions, including the use of formal regulatory mechanisms, the education of
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TEAM MEMBERS: Timothy Caulfield
resource research Media and Technology
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
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TEAM MEMBERS: Alessandro Delfanti
resource research Media and Technology
This report highlights advances in neuroscience with potential implications for education and lifelong learning. The report authors, including neuroscientists, cognitive psychologists and education specialists, agree that if applied properly, the impacts of neuroscience could be highly beneficial in schools and beyond. The report argues that our growing understanding of how we learn should play a much greater role in education policy and should also feature in teacher training. The report also discusses the challenges and limitations of applying neuroscience in the classroom and in learning
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TEAM MEMBERS: The Royal Society Uta Frith
resource research Media and Technology
Her name was Henrietta Lacks, but scientists know her as HeLa. She was a poor black tobacco farmer whose cells—taken without her knowledge in 1951—became one of the most important tools in medicine, vital for developing the polio vaccine, cloning, gene mapping, in vitro fertilization, and more. Henrietta’s cells have been bought and sold by the billions, yet she remains virtually unknown, and her family can’t afford health insurance. Soon to be made into an HBO movie by Oprah Winfrey and Alan Ball, this New York Times bestseller takes readers on an extraordinary journey, from the “colored”
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TEAM MEMBERS: Rebecca Skloot